Kidney Disease Support Directory

Find trusted kidney disease support organizations, transplant resources, dialysis help, financial assistance, and patient support services across the U.S. Browse 257 verified organizations covering donor search, emotional support, financial assistance, dialysis support, transplant education, and more.

• National Kidney Foundation (NKF) — The leading nonprofit organization focused on kidney disease prevention, treatment, and cure. Offers patient resources, peer mentoring (NKF Peers), and transplant education. Also operates the NKF Cares patient helpline (855-653-2273), staffed by renal social workers who provide emotional support, coping resources, and help navigating kidney disease — free of charge.
• American Kidney Fund (AKF) — Provides direct financial assistance to dialysis and transplant patients for treatment-related costs and health insurance premiums. One of the largest kidney-specific funders.
• American Association of Kidney Patients (AAKP) — Patient-led organization providing advocacy, education, and support programs for people affected by kidney disease. Publishes resources and hosts national conferences.
• United Network for Organ Sharing (UNOS) — Manages the U.S. national organ transplant system and waiting list. Administers organ matching policies and transplant data. Also operates transplantliving.org for patient education.
• Dialysis Patient Citizens (DPC) — Dialysis Patient Citizens (DPC) is a patient-led, nonprofit advocacy organization focused exclusively on improving the quality of life of dialysis patients. It works to elevate the patient voice with policymakers on issues such as access to care, financial security, private insurance protections, and workforce shortages affecting patient care. DPC offers educational resources, a Medigap Report Card to help patients compare state coverage, and its KidneyAction.org platform for grassroots advocacy. Membership and participation are open to dialysis patients and their families.
• PKD Foundation — The PKD Foundation is the only U.S. organization solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and improving the lives of the more than 500,000 Americans it affects. It funds PKD research, advocates for patients (including the PKD Cures Act in Congress), and delivers education. Patients and caregivers can access educational resources, patient stories, a treatment pipeline overview, the ADPKD Patient Registry, and a 'Find Care' directory. The Foundation also builds community through local Walk for PKD events, peer connection, and volunteer programs.
• Renal Support Network (RSN) — Peer-to-peer support organization staffed by kidney disease survivors. Provides emotional support hotline, educational events, and a patient-centered magazine (aakpRENALIFE).
• National Living Donor Assistance Center (NLDAC) — HRSA-funded program providing financial assistance to living kidney donors for travel, lodging, and lost wages related to donation surgery. Helps remove financial barriers to living donation.
• Transplant Recipients International Organization (TRIO) — Peer-support network for transplant recipients, candidates, living donors, and donor families. Runs free, confidential, patient-led virtual peer support meetings over Zoom: a group for transplant recipients and candidates every Tuesday and Thursday at 7:30pm Eastern, and a Care Partner group for the family members and friends who carry the journey too, on the first and third Wednesday of each month at 7:30pm Eastern — no registration required (see the Peer to Peer support program page on trioweb.org for joining details). Also maintains local chapters with their own support groups, a Care Partner program, a scholarship program, and community resources.
• National Transplant Assistance Fund (NTAF) — The National Transplant Assistance Fund (NTAF) was a pioneering nonprofit founded in 1983 that helped transplant patients and living donors raise funds for transplant-related medical expenses through community fundraising campaigns, grants, and family support services. NTAF has since merged into Help Hope Live (helphopelive.org), which continues this mission nationwide. Patients seeking transplant fundraising assistance are now served through Help Hope Live's guided community-fundraising programs. The organization does not charge patients to establish a fundraising campaign.
• HealthWell Foundation — The HealthWell Foundation is an independent nonprofit that helps underinsured patients afford essential treatments and medications by covering copays, health insurance premiums, deductibles, and other out-of-pocket costs. It operates disease-specific funds that open and close based on available funding, including funds relevant to kidney patients such as IgA Nephropathy, Hyperoxaluria, and immunosuppressive treatment for solid organ transplant recipients. To qualify, patients must have some form of health insurance, be receiving treatment in the U.S. or its territories, and meet income guidelines (within 500% of the Federal Poverty Level). Patients can check open funds and apply online through the Foundation's website.
• Patient Advocate Foundation (PAF) — Provides case management, mediation, and financial assistance to patients with chronic illness. Helps kidney patients navigate insurance denials, access benefits, and obtain co-pay relief.
• Donate Life America — National organization managing the national donor registry. Leads public education campaigns to increase deceased organ donation registration and promote transplant awareness.
• Alliance for Paired Donation — The Alliance for Paired Kidney Donation (APKD) is a nonprofit that facilitates paired kidney exchanges (also called swaps or chains) for patients whose willing living donor is not a compatible match. Nearly half of potential kidney donors are incompatible with their intended recipient, and paired exchange lets those donors give to another recipient while their loved one receives a compatible kidney in return. APKD coordinates matching across cooperating transplant hospitals and offers patient education about how the different paired-exchange programs work. It is based in Perrysburg, Ohio.
• NephCure Kidney International — The only nonprofit organization solely focused on rare kidney diseases including nephrotic syndrome, FSGS, IgA nephropathy, and related glomerular conditions in both adults and children. Offers patient navigation services, online patient community, support groups, specialist finder, clinical trials directory, mental health resources, diet and nutrition guidance, and genetic testing information. Includes a dedicated pediatric care section.
• Children's Organ Transplant Association (COTA) — Provides fundraising assistance and grants for children and young adults needing organ transplants, including kidney transplants. Helps families manage transplant-related financial burdens.
• Kidney Foundation of Canada — The Kidney Foundation of Canada is the country's leading kidney-health charity, offering patient support, financial assistance, peer connections, transplant and living-donor education, and advocacy for Canadians living with kidney disease. It operates through regional branches across the country, each with local staff and programs. Services include the Living Donor Circle of Excellence and the Kidney Car vehicle-donation program that funds patient support. Patients can reach their nearest branch by phone or email through the Foundation's contact directory.
• Kidney Health Australia — Kidney Health Australia is the nation's leading kidney health charity, providing patient support, education, and advocacy for people affected by kidney disease. It operates a free, national Kidney Helpline staffed by health professionals to answer kidney health questions and support people managing a diagnosis. The organisation also offers a free online Kidney Risk Test, resources for patients and health professionals, and awareness campaigns. Its postal address is GPO Box 9993, Melbourne VIC 3001.
• IGA Nephropathy Foundation of America — The IgA Nephropathy Foundation is a nonprofit patient advocacy and support organization dedicated to IgA nephropathy (Berger's disease), one of the most common forms of primary glomerular kidney disease. It provides patient education, a supportive community, and support for research into the causes and treatment of the condition. Patients and families can reach the foundation by phone or by mail at its New Jersey office. The foundation works to raise awareness and connect those affected by IgAN with information and resources.
• Patient Services Inc. (PSI) — Patient Services Inc. (PSI) is a nonprofit that provides health insurance premium and cost-sharing assistance to people living with chronic and rare diseases, including those on dialysis or awaiting a transplant. It helps eligible patients maintain their coverage by assisting with Medicare, Medigap, and private insurance premiums as well as certain out-of-pocket costs. Assistance is offered through disease-specific programs that depend on available funding. Patients can reach PSI by phone or apply through the organization's website.
• Transplant Living (UNOS) — Transplant Living is the patient-education website operated by the United Network for Organ Sharing (UNOS), the nonprofit that runs the U.S. organ transplant system. It provides guidance for patients and families across the transplant journey, including how the waiting list works, understanding organ offers, financing a transplant, and life after transplant. Patients with questions can reach the toll-free OPTN/UNOS Patient Services Line at 1-888-894-6361. Note: standalone content has been consolidated into UNOS.org resources.
• MatchingDonors.com — MatchingDonors.com is a 501(c)(3) nonprofit online platform that connects patients needing a kidney (or other organ) transplant with potential altruistic living donors. Patients create a profile telling their story so interested living donors can find and contact them directly; donors are never charged. To activate a profile, patients must purchase a membership (organ registry fee) — a lifetime membership is listed at $595.00, though financing, hardship options, and free memberships for United Kingdom patients are available by calling 781-821-2204. Because many free donor-search resources exist, it is worth exploring those and your own family and friends first before paying for access.
• ESRD National Coordinating Center (ESRD NCC) — The ESRD National Coordinating Center (ESRD NCC) supports CMS's End-Stage Renal Disease (ESRD) quality improvement network program, helping dialysis facilities and the regional ESRD Networks improve patient care. It develops resources and tools on topics such as infection prevention, patient engagement, emergency preparedness, and reducing hospitalizations. The center serves patients, families, and dialysis providers nationwide. It is based in Tampa, Florida (3000 Bayport Dr).
• Global Kidney Foundation — The Global Kidney Foundation is a U.S. 501(c)(3) nonprofit (Houston/Richmond, Texas area) focused on improving access to kidney care. It runs a Dialysis Assistance Program providing emergency and recurring financial support for patients who cannot afford dialysis, a Transplant Support Program covering anti-rejection medications and post-transplant coordination for qualifying low-income patients, and a Widow & Family Support Program offering micro-grants and case management. The foundation also conducts global awareness campaigns on kidney disease prevention and early detection. It reports having assisted 340+ patients and disbursed over $480K directly to patients.
• Kidneys for Communities — Kidneys for Communities is a nonprofit that uses a Community-Directed Donation model to increase the number of living kidney donors by drawing on the strength of shared communities and affinity groups, such as the National Fallen Firefighters Foundation. The organization helps connect patients in need of a kidney with potential living donors, and its contact materials note that this matching help is provided at no cost. A single kidney donation chain sparked through the program can help save many lives. Interested patients, donors, and community leaders can reach the team by phone, email, or the website contact form.
• National Kidney Registry (NKR) — The National Kidney Registry (NKR) is one of the largest living-donor kidney exchange networks in the United States, working to increase living kidney donation and improve donor-recipient matching. It operates paired-donation chains, voucher donation (donate now so a loved one receives future priority), remote donation, and direct donation programs. NKR administers Donor Shield, a comprehensive living-donor protection program covering lost wages, travel and other expenses, kidney prioritization, life insurance support, legal support, and complication protection. Prospective donors and recipients can register online and contact NKR by phone or through its contact form.
• Kidney Konnect — Kidney Konnect was founded by kidney transplant recipient Jason Berry — who battled kidney failure for over 10 years — to provide kidney awareness, education, and resources to the Black and Brown communities of South Los Angeles. The organization highlights racial disparities in kidney disease and living donation, noting that African Americans are far more likely to experience kidney failure yet are underrepresented among living donors. Its programs include community podcasts, health-and-wellness events (such as run clubs and other 'Health & Hip Hop' activities), and educational outreach. Community members can get involved, donate, or subscribe to events through the website.
• Transplant Village (Northwestern Medicine Transplant Advisory Council) — Patient- and donor-led community (Transplant Village) affiliated with Northwestern Medicine's Comprehensive Transplant Center, managed by the Northwestern Medicine Transplant Advisory Council. Offers a buddy program, donor and patient assistance funds, and advocacy support for transplant recipients and living donors, and raises funds for transplant research and patient care.
• Gift of Life Institute — Gift of Life Institute is an international training center for organ and tissue donation professionals, and a division of the Gift of Life organization. It offers instructor-led classes, CEPTC- and ABTC-accredited online courses, and consulting services to help Organ Procurement Organizations improve quality and outcomes. Its Dual Verification eLearning promotes error-free, safe donation practices. Professionals can enroll in courses or request consulting through the Institute's website.
• Agent Kidney — Agent Kidney is an AI-powered assistant (a custom GPT on ChatGPT) that helps kidney patients navigate their condition, understand treatment options, and advocate for themselves. Provides on-demand education and guidance on kidney disease, dialysis, and transplant topics.
• Dialysis Disciples — Founded by Troy Snead Sr.—a U.S. Marine Corps veteran, entrepreneur, and dialysis patient—Dialysis Disciples offers faith-based encouragement and peer support for people undergoing dialysis. Troy is the author of 'A Gifted Tome: The 40-Day Spiritual Fast for Dialysis Patients,' a daily devotional of prayer, meditation, and reflection designed to build resilience and hope during treatment. Offers in-person and virtual spiritual coaching sessions for patients and families navigating kidney disease.
• Kidney Stories Toastmasters — Official Toastmasters International club (Club #7979708) dedicated to the kidney community, connecting patients, donors, and advocates across the USA and the world. Members develop communication and public-speaking skills to share their kidney journeys, raise awareness, and advocate for the transplant community. A kidney specialty club and President's Distinguished Club (2023–2024) that hosts speeches and expert/patient panel discussions on kidney disease, including dialysis summits. Meets virtually on the 1st and 3rd Sunday of each month.
• Bay Area Association of Kidney Patients (BAAKP) — Regional patient-led association serving kidney disease patients in the San Francisco Bay Area. Provides local advocacy, peer support, and educational programming for dialysis and transplant patients.
• NKDO (National Kidney Donation Organization) — The National Kidney Donation Organization (NKDO) advocates for living kidney donation and supports both living donors and those exploring the donation process. It offers mentoring, education, community-building, and advocacy initiatives, including regular virtual events, webinars, and support meetings held over Zoom. NKDO highlights that living-donor kidneys tend to last nearly twice as long as deceased-donor kidneys and works to reduce the barriers that keep people on the transplant waiting list. Patients and prospective donors can connect with the organization and its programs through its website.
• Abundant (Documentary Film) — ABUNDANT is a documentary film about living kidney donation, recorded before a live audience at Dallas' historic Majestic Theater in September 2024. It features the personal stories of living kidney donors alongside interviews with experts from medicine, science, psychology, neuroscience, spirituality, economics, and system change. The film is used as an awareness and education tool within the kidney community to inspire potential donors and inform patients about donation and transplantation. It is available to stream (with a special Kidney Patient Edition offered), and gifted copies are made available to kidney patients, recipients, and donors.
• Kidney for Kids — Organization focused on supporting children with kidney disease and their families, providing age-appropriate education, advocacy, and community resources for pediatric kidney patients.
• Home Dialyzors United (HDU) — Home Dialyzors United (HDU) is a patient advocacy organization promoting home dialysis (peritoneal dialysis and home hemodialysis) as a patient choice. It has focused on educating patients about home dialysis options and advocating for policies that expand access. Note: the organization's former website is no longer active.
• KidneyBuzz — KidneyBuzz.com is an online news and community platform for chronic kidney disease and dialysis patients, offering the latest research, treatment updates, diet and lifestyle tips, and patient community stories. Content is freely accessible and covers practical day-to-day guidance for people living with kidney failure and those on dialysis or awaiting transplant. It is a long-standing, widely referenced news source within the kidney patient community.
• American Society of Transplantation (AST) — Professional society for transplant professionals including physicians, scientists, and surgeons. Promotes excellence in transplantation through education, research, and advocacy. Provides patient-facing educational resources.
• American Society of Nephrology (ASN) — Leading professional organization for kidney specialists (nephrologists). Provides patient education resources, policy advocacy, and publishes leading nephrology research journals.
• Kidney Warriors Foundation — Kidney Warriors Foundation is a community-based foundation supporting kidney disease patients through peer advocacy, emotional support, and awareness campaigns. It encourages patients to take an active role in their health journey. No active official website could be located during verification, so contact details could not be independently confirmed.
• Living Kidney Donors Network (LKDN) — The Living Kidney Donors Network (LKDN) is a nonprofit 501(c)(3) that helps people who need a kidney transplant find a living donor and supports living donors before and after donation. It offers education on paired exchange and the 'conundrum' of having a willing but incompatible donor, along with guidance on registering across transplant centers and cooperative exchange programs. LKDN provides peer support, advocacy, and resources for both potential donors and recipients. Visitors can reach the organization by email or its online contact form.
• Kidney Smart (DaVita) — Kidney Smart is DaVita's kidney-health education program offering no-cost, expert-led classes to help people understand chronic kidney disease and take control of their care. Classes are taught by certified kidney care educators and are available both in person and online, with more than 300,000 people having attended. Topics include CKD basics and causes, treatment options (including dialysis and transplant), diet and nutrition, and insurance and employment considerations. Patients can find and register for a nearby or online class through DaVita's website or by phone.
• Gift of Life Michigan — One of the largest organ procurement organizations (OPOs) in the U.S. serving Michigan. Manages deceased organ donation, educates the public, and supports donor families and transplant recipients.
• International Kidney Cancer Coalition (IKCC) — The International Kidney Cancer Coalition (IKCC) is a global network of kidney cancer patient advocacy organizations working to reduce the worldwide burden of kidney cancer. It raises awareness, shares evidence-based patient insights (including its Global Patient Survey), and provides shareable educational materials through its Info Hub. IKCC leads World Kidney Cancer Day each June and supports patients with renal cell carcinoma through advocacy and access initiatives. General inquiries can be directed to Executive Director Olivier Exertier at olivier@ikcc.org.
• Fish Guy Transplant Organization — Patient-led organization using creative community outreach to raise awareness about kidney transplantation and living donation. Known for grassroots engagement to connect potential donors and recipients.
• No Greater Love Foundation — No Greater Love Foundation is a foundation that promotes living kidney donation through storytelling and community outreach, highlighting the selfless act of living donors and helping patients share their stories to find potential donors. No active official website could be located during verification, so contact details could not be independently confirmed.
• CKD Peer Connect — CKD Peer Connect is described as a peer-mentoring program that connects newly diagnosed chronic kidney disease (CKD) patients with experienced patients who have navigated similar journeys, providing emotional support and practical guidance. Peer mentoring of this kind pairs patients one-to-one so that people facing a new diagnosis can learn from others who have lived with CKD, dialysis, or transplant. Patients seeking similar structured peer support may also consider established national programs such as NKF Peers.
• Polaris Kidney Foundation — Patient advocacy foundation supporting kidney disease patients through community building, peer support, and policy advocacy. Focuses on empowering patients to lead their care decisions.
• Texas Transplant Network — Texas Transplant Network is a Texas-based nonprofit that empowers living organ donors to give the gift of life without bearing the financial burden of donation. Through The Bradley Freeland Fund, it reimburses living donors for ancillary, non-medical expenses such as travel, lodging, meals, parking, and childcare, pet, or elder care. Support is based on a donor's willingness to give rather than income. Prospective applicants apply for support through the organization's online form.
• LifeGift — LifeGift is the federally designated organ procurement organization (OPO) serving more than 100 counties across north, southeast, and west Texas, including the Houston area. It supports families through the organ and tissue donation process, coordinates deceased donation, and delivers life-saving transplants to recipients in need. LifeGift promotes donor registration through Donate Life Texas and offers donor-family support services. Anyone can register as an organ, eye, and tissue donor online free of charge.
• Southwest Transplant Alliance (STA) — Southwest Transplant Alliance (STA) is the federally designated organ procurement organization serving the Dallas/Fort Worth area and surrounding regions of Texas. It coordinates deceased organ and tissue donation between hospitals and transplant centers and provides support and resources to donor families and recipients. The organization also runs community engagement, education, and youth outreach programs to encourage donor registration. STA's main office is in Dallas, and it can be reached by phone or through its website (organ.org).
• Transplant Texas — The Texas Transplantation Society (Transplant Texas) is a statewide professional membership organization that supports the transplant community across Texas, connecting clinicians, transplant centers, patients, and donors. It provides organ-donation resources, patient support-group information, and educational programming, including an annual scientific meeting. The society promotes collaboration and advances transplantation across the state. Patients and members can reach the organization by phone, email, or through its website.
• Donor Network West — Donor Network West is the nonprofit organ procurement organization (OPO) serving northern California and northern Nevada, reaching a service area of more than 13 million people. Its mission is to save and heal lives through organ, eye, and tissue donation for transplantation and research. The organization coordinates deceased donation, promotes organ-donor registration, and provides donor-family aftercare and community education. Headquartered in San Ramon, California (with a Nevada office in Reno and regional offices in Fresno, San Jose, and Stockton), it can be reached at 925-480-3100 or, for Spanish, 800-588-0024.
• Lifesharing — Lifesharing is the federally designated, nonprofit organ and tissue procurement organization (OPO) serving San Diego and Imperial counties in Southern California, operating as a division of UC San Diego Health. It coordinates organ and tissue donation, works with hospitals, and honors donor families. Lifesharing also supports connections between donor families and transplant recipients and promotes donor registration among San Diegans.
• Gift of Hope — Gift of Hope is the federally designated organ procurement organization (OPO) coordinating organ and tissue donation across Illinois and northwest Indiana. It works with hospitals and transplant centers to facilitate donation, maintains the donor registry, and provides donor-family support and community outreach, including bilingual (English/Spanish) resources and multiethnic donor awareness programs. Individuals can join the donor registry online at no cost to give hope to thousands of people waiting for life-saving transplants.
• Versiti — Versiti is a multi-state blood health and donation organization serving the Midwest, with operations across Illinois, Indiana, Michigan, Ohio, and Wisconsin. It brings together lifesaving blood services, advanced diagnostic laboratory expertise, organ and tissue donation programs, and research through the Versiti Blood Research Institute. Versiti supports patients and healthcare providers by providing difficult-to-match blood, complex lab testing, and specialty healthcare programs. Individuals can find contact information for its blood centers, laboratories, and organ and tissue donation services through the Versiti website.
• Midwest Transplant Network — Midwest Transplant Network (MTN) is a nonprofit organ procurement organization (OPO) serving Kansas and the western two-thirds of Missouri. It coordinates organ and tissue donation, works with hospitals and transplant centers to facilitate recovery and transplantation, and supports donor families throughout the donation process. MTN also provides community education to raise awareness of the need for registered donors. The organization is based in Westwood, Kansas, and can be reached by phone or through its online contact form.
• Mid-America Transplant — Mid-America Transplant is the federally designated organ procurement organization (OPO) serving eastern Missouri, southern Illinois, and northeastern Arkansas, covering 84 counties. It coordinates deceased organ, eye, and tissue donation and provides support services for donor families across the region. The organization is based in St. Louis, Missouri (1110 Highlands Plaza Dr. East). Patients, families, and medical professionals can reach it at 314-735-8200 or info@midamericatransplant.org.
• Iowa Donor Network — Iowa Donor Network is Iowa's organ, eye, and tissue procurement organization, coordinating donation statewide. It provides a 24-hour statewide contact line, donor family aftercare services, educational programs, and community outreach and events. A dedicated Donor Family Care team supports donor families with grief resources and questions about their loved one's gifts. The organization also offers education and event support upon request.
• Lifebanc — Lifebanc is the federally designated organ procurement organization (OPO) serving northeast Ohio, including the Cleveland region. It coordinates organ, eye, and tissue donation 24/7, working with hospitals to facilitate donation and connect donors with recipients in need. Lifebanc provides bereavement and donor-family support, faith-community and multicultural outreach, and public education. Ohio residents can register as donors free of charge through the state BMV or Donate Life.
• Lifeline of Ohio — Lifeline of Ohio is the organ procurement organization serving central and southeastern Ohio and parts of West Virginia. It coordinates organ, eye, and tissue donation and encourages residents to register their decision in the Ohio Donor Registry. The organization provides grief support, donor family resources, candlelight remembrance ceremonies, multicultural outreach, and school and community education programs. Its main office is in Columbus and staff are available around the clock; the public can reach the organization by phone or through its website.
• Donate Life Indiana — Donate Life Indiana promotes organ, eye, and tissue donation across Indiana and maintains the state's official donor registry, where more than 4.2 million Hoosiers have registered. It raises awareness through campaigns and community partnerships, offers speaker requests and educational presentations, and helps residents sign up to be donors or remove themselves from the registry. The program is operated in partnership with Indiana Donor Network. Patients and the public can connect through the website's contact and sign-up forms.
• Donate Life Wisconsin — Donate Life Wisconsin is a nonprofit (501c3) coalition of Wisconsin recovery organizations, transplant centers, governmental partners, and community groups dedicated to educating, inspiring, and activating Wisconsinites to register as organ, tissue, and eye donors. Anyone age 15 or older in Wisconsin can join the registry, including through the DMV and the state's 'Orange Dot' program. The organization notes that one donor can save up to 8 lives, restore sight to 2 people, and heal more than 75 through tissue donation. Questions, speaker requests, and information can be submitted through the contact form on its website.
• Donate Life Northwest — Donate Life Northwest is a nonprofit serving Oregon and Southwest Washington that educates the public about organ, eye, and tissue donation and encourages donor registration. It runs school and community education programs, volunteer opportunities, and bilingual outreach, and advocates to reduce disparities in transplantation. Its office is at 2611 S.W. Third Ave, Suite 250, Portland, OR 97201 (mailing: P.O. Box 532, Portland, OR 97207). Hospital professionals with donor referrals use a dedicated line (1-800-344-8916).
• LifeCenter Northwest — LifeCenter Northwest is the federally designated organ procurement organization (OPO) serving Alaska, Idaho, Montana, and Washington. It coordinates organ and tissue donation, works with hospitals and transplant centers, and connects donor families with recipients. LifeCenter Northwest provides grief, bereavement, and aftercare services for donor families and offers education and resources on the donation process. Registering as an organ, eye, and tissue donor is free through Donate Life.
• New England Donor Services (NEDS) — New England Donor Services (NEDS) is the organ procurement organization serving all six New England states. It manages organ and tissue donation, works with hospital partners on donor referrals, and supports donor families, including through the Caring Connections program and the Henderson scholarship program. NEDS provides bilingual resources in English and Spanish. The organization is based in Waltham, Massachusetts, and can be reached by phone or email for general inquiries.
• NJ Sharing Network — New Jersey's federally designated organ procurement organization (OPO), managing organ and tissue donation statewide and operating its own transplant laboratory. Offers donor family grief support services, guidance for writing to donor families and recipients, volunteer and multicultural/faith outreach programs, 5K community events, and public education about the life-saving impact of donor registration. Site available in English and Spanish.
• Gift of Life Donor Program — Gift of Life Donor Program is the nonprofit organ procurement organization (OPO) serving the greater Philadelphia region and parts of the Mid-Atlantic. It coordinates deceased organ and tissue donation, partners with area hospitals and transplant centers, and supports donor families through the donation process. Gift of Life also operates Gift of Life Howie's House, providing lodging and support for transplant patients and families, and offers resources for those considering donation. The organization is headquartered in Philadelphia and can be reached by phone or its online contact form.
• Donate Life Florida — Donate Life Florida is the nonprofit that operates Florida's official organ, eye, and tissue donor registry (Joshua Abbott Organ and Tissue Donor Registry). It manages statewide donor registration, offers resources in both English and Spanish, and runs public campaigns to increase donor enrollment. The organization can be reached by mail at P.O. Box 830026, Ocala, FL 34483, by phone at 941-308-1019, or by email at contactus@donatelifeflorida.org, and it provides a website contact form for questions.
• Donate Life South Carolina — Donate Life South Carolina is a state-authorized nonprofit responsible for managing South Carolina's organ, eye, and tissue donor registry. It works to increase the number of registered donors through education, faith-based and community outreach, and events. The organization also administers patient assistance funding to help South Carolinians pursuing transplantation. Its office is located at 2215 Henry Tecklenburg Dr, Charleston, SC 29414.
• Carolina Donor Services — Carolina Donor Services now operates as HonorBridge, the federally designated nonprofit organ procurement organization (OPO) serving about 7.5 million people across 78 counties in North Carolina and Virginia. HonorBridge coordinates deceased organ, eye, and tissue donation between hospitals and transplant centers, supports donor families, and provides community education on the importance of donation. A single donor can save or improve the lives of 75 or more people. Registering as a donor is free.
• Tennessee Donor Services — Tennessee Donor Services (TDS), part of DCI Donor Services, is the nonprofit organ procurement organization whose mission is to save and improve lives through organ, eye, and tissue donation. It connects lifesaving gifts to patients in need and serves more than 6 million people across Tennessee and southwest Virginia. The organization supports donor families and recipients, honors donor heroes through memorials, and runs donor registration outreach and community education programs. TDS is headquartered in Nashville and can be reached by phone or through its website (tennesseedonor.org).
• Kentucky Organ Donor Affiliates (KODA) — Kentucky Organ Donor Affiliates (KODA) is Kentucky's designated organ procurement organization (OPO), coordinating organ and tissue donation statewide. Its mission is to provide organs and tissues to those in need while maintaining a profound respect for donors who give the gift of life. KODA works with hospitals and transplant centers, supports donor families, and conducts community outreach and education to encourage donor registration across Kentucky. The organization is based in Louisville and can be reached by phone.
• Washington Regional Transplant Community (WRTC) — Washington Regional Transplant Community (WRTC) is the nonprofit organ procurement organization (OPO) serving the greater Washington, D.C. metropolitan area, including the District of Columbia, northern Virginia, and suburban Maryland. It coordinates organ and tissue donation, supports donor families, and promotes donation awareness across the mid-Atlantic region. WRTC is located at 3190 Fairview Park Drive, Suite 700, Falls Church, VA 22042 and can be reached at 703-641-0100.
• LifeNet Health — LifeNet Health is a nonprofit global leader in organ procurement, tissue banking, and regenerative medicine, with international reach. It provides organ and tissue donation services, bioimplants, and an Institute of Regenerative Medicine, supporting transplantation and patient healing worldwide. The organization partners with hospitals and clinicians and honors donors and donor families. Its Northwest office is at 501 SW 39th Street, Renton, WA 98057.
• National Foundation for Transplants — The National Foundation for Transplants (NFT) was a Memphis-based nonprofit that for 41 years helped transplant patients — including kidney recipients — raise funds for medical and wraparound expenses through community fundraising campaigns. NFT announced it was closing in April 2024 and was subsequently subject to dissolution proceedings by the Tennessee Attorney General. The organization is no longer operating, and patients should seek transplant financial assistance from other active nonprofits. This listing is retained for historical reference only.
• Transplant Games of America — The Transplant Games of America (TGA) is a biennial, Olympic-style athletic competition produced by the Transplant Life Foundation for organ, eye, and tissue transplant recipients, living donors, and donor family members. Recipients compete to honor their donors and show that there is life and health after transplant, while living donors demonstrate that donation has not slowed them down and donor families gather to honor their loved ones. With a history spanning more than three decades, the Games promote awareness of donation and transplantation, celebrate recovery, and build a national transplant community. Information and registration are available through the TGA website.
• LifeSource — LifeSource is the nonprofit organ procurement organization (OPO) serving the Upper Midwest, including Minnesota, North Dakota, South Dakota, and parts of Wisconsin. It coordinates organ, eye, and tissue donation, partnering with hospitals and transplant centers and supporting donor families throughout the donation process. LifeSource also runs public-education and outreach programs to increase donor registration across the region. The organization is headquartered in Minneapolis and can be reached by phone, toll-free line, or email.
• Nevada Donor Network — Nevada Donor Network is Nevada's designated 501(c)(3) nonprofit organ procurement organization (OPO), responsible for facilitating organ, eye, and tissue donation statewide. Its mission is to save and heal lives through donation, coordinating, recovering, and allocating lifesaving organs and healing tissues for transplantation and research. The organization promotes donor registration, supports donor families through its Aftercare Program, and works with transplant centers across the state. It is located at 2055 E Sahara Avenue, Las Vegas, NV 89104 and can be reached at 855-855-6836.
• New York Organ Donor Network (LiveOnNY) — LiveOnNY (formerly the New York Organ Donor Network) is the federally designated organ procurement organization serving the greater New York City area, including the five boroughs and Westchester, Nassau, and Suffolk counties. A team of more than 300 clinicians, educators, and social workers coordinates organ and tissue donation, supports donor families, and promotes donor registration. Healthcare partners make lifesaving referrals through its dedicated line, 1-800-GIFT-4-NY. Its office is located at 30-30 47th Ave, Long Island City, NY 11101.
• Arkansas Regional Organ Recovery Agency (ARORA) — The Arkansas Regional Organ Recovery Agency (ARORA) now operates as Southern Legacy of Life, the organization coordinating organ, eye, and tissue donation across Arkansas. It serves as the bridge between donors and patients awaiting transplant, partnering with hospitals to facilitate donation. Southern Legacy of Life provides compassionate support to donor families and leads community education to encourage donor registration. Registering as a donor is free.
• Kidney Solutions — Kidney Solutions is a nonprofit community led by transplant recipients, living donors, caregivers, and advocates that supports people navigating kidney transplantation and living donation. It provides mentoring, weekly Zoom support groups (Mondays at 6:00 pm Central), and practical education, and the organization states that all services are provided free of charge to patients and their families. It also produces the 'Kent's Kidney Stories' podcast, hosted by Kent Bressler, RN, a transplant recipient and the organization's Vice President. Kidney Solutions relies solely on individual donations and foundation grants and never charges patients.
• Donor Shield — Donor Shield is a comprehensive protection program for living kidney and liver donors, administered through the National Kidney Registry. It is designed to make donation safer and more affordable by providing financial assistance, protections, and support throughout the entire donation process. Protections can include lost-wage reimbursement, donor expense reimbursement, kidney prioritization (donors receive transplant priority if they ever need one), pet-care reimbursement, life insurance support, legal support, complication protection, home blood draws, and donor mentoring. Donors qualify for Donor Shield by participating through NKR-affiliated programs.
• Kidney Cancer Association (KCA) — The Kidney Cancer Association (KCA) is a leading advocacy and support organization for people affected by kidney cancer (including renal cell carcinoma) and their caregivers. From diagnosis onward, it offers resources such as one-on-one help from a patient liaison, information on financial-assistance options, and connection with other patients and caregivers. The KCA provides newly diagnosed guides, treatment-center and clinical-trial finders, caregiver essentials, patient stories, and an educational podcast. Patients can begin with its 'Understanding Kidney Cancer' and 'Get Support' resources through the website.
• TransplantFirst! (Risa Simon, Founder & CEO) — 501(c)(3) kidney patient empowerment organization founded by Risa Simon — a preemptive (live-donor) PKD transplant recipient and fierce patient advocate. Programs include TransplantFirst Academy, The Proactive Path, and Simon Says Seminars, offering motivational coaching, donor-finding strategies, and advocacy training. Author of "In Pursuit of a Better Life" (guide for finding living kidney donors) and "Shift Your Fate" (proactive patient wisdom). Seminars include "How to Become a Donor Magnet-Pro!" and "The TransplantFirst Advantage!" Awards: NKF 2018 Patient Engagement Award; AAKP 2014 Samuel J. Orenstein Award. Pioneer behind Arizona's Living Kidney Donors Day and Senate Bill SB 1100 for Living Organ Donor Insurance Protections. Serves as peer mentor for NKF, PKD Foundation, AAKP, and American Transplant Foundation.
• Home Dialysis Central — Home Dialysis Central is a comprehensive education and comparison resource for home dialysis (peritoneal dialysis and home hemodialysis), run by the nonprofit Medical Education Institute. It offers tools such as a UFR calculator and Medicare cost calculator, machine comparisons, a clinic finder, patient stories, expert Q&A, and free e-classes to help patients choose and manage home treatment. The site aims to help patients live better, longer lives through home dialysis. Contact: Medical Education Institute, 414 D'Onofrio Dr, Suite 200, Madison, WI 53719.
• TransplantNews — Transplant News is a freely accessible online news platform covering stories that matter to the transplant community — including kidney, liver, heart, lung, and pancreas transplants. It reports patient stories, the latest transplant innovations, donation and policy developments, and patient-advocacy news. Content is published for the general transplant community, including patients, families, donors, and professionals, and is free to read online.
• NIDDK Kidney Disease Information (NIH) — The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH provides authoritative, research-backed patient education on all kidney conditions — CKD, dialysis, transplantation, glomerular disease, and more. A primary U.S. government resource for kidney patients.
• KidneyFuture (formerly CAKUT Foundation) — KidneyFuture (formerly the CAKUT Foundation) is a patient-powered nonprofit supporting families and individuals born with Congenital Anomalies of the Kidney and Urinary Tract (CAKUT), such as a single kidney, reflux, blockages, cysts, or small or abnormal kidneys. The foundation notes these early kidney differences are a leading cause of kidney disease in people under 30 and unites patients and families with nephrology clinicians, researchers, and advocates. It offers resources including nutritional guides, children's books, and clinician-led medical explainers and webinars. Prospective members can connect and ask questions through the community sign-up and contact forms on its website.
• Alport Syndrome Foundation — Patient advocacy and support organization for Alport syndrome — a rare genetic kidney disease caused by mutations in collagen genes, often diagnosed in childhood. Provides educational resources, parent guides, treatment and medication monitoring guidance, FDA Voice of the Patient Report, patient podcast, and an active member community.
• IgA Nephropathy Foundation — The IgA Nephropathy Foundation is a patient-advocacy nonprofit dedicated to supporting patients and advancing research toward a cure for IgA nephropathy (Berger's disease), a common form of glomerulonephritis in which an abnormal antibody damages the kidney's filtering units. The Foundation notes that an estimated 20–40% of people with IgAN progress to end-stage kidney disease, requiring dialysis or transplant. It provides a global patient network, a nephrologist finder, treatment and lab-result guides, biopsy interpretation resources, and kidney-friendly recipes, and it hosts IgA Nephropathy Day and the annual SPARK conference. The Foundation can be reached by phone or mail.
• NAPRTCS (North American Pediatric Renal Trials) — NAPRTCS (North American Pediatric Renal Trials and Collaborative Studies) is the definitive research registry and clinical resource for serious kidney disease in children, founded in 1987. Its registries include data from more than 20,000 children with kidney transplants, on dialysis, or with chronic kidney disease from over 100 participating institutions across the United States, Canada, Mexico, and Costa Rica. NAPRTCS has initiated eight NIH-funded prospective clinical trials and collaborates with pharmaceutical partners on multi-center studies. Families can use NAPRTCS to identify specialist centers that treat children at all stages of kidney disease, and inquiries can be submitted through the website contact form.
• Kidney Search Foundation (KSF) — 501(c)(3) organization that provides free promotional tools to kidney patients searching for a living donor — including T-shirts, car magnets, window decals, banners, flyers, videos, and a personal profile page on the KSF website to attract potential donors. To date has served 153+ patients at no cost. Success stories include donors who found patients via a car window decal and through browsing the KSF website profile section. Also runs a Facebook group and fundraising campaigns. All donations are tax deductible.
• Circle of CORE Kidney Foundation — Nonprofit founded under the vision of Dr. Anjay Rastogi, MD, PhD — Professor and Clinical Chief of Nephrology at UCLA Health — to support and advance the UCLA Health CORE Kidney Program and like-minded institutions. The Circle of CORE is a patient advocacy and support group of grateful kidney patients, caregivers, and living donors who share experiences and build community. Programs include community outreach (including a Tijuana nutritional initiative), signature gala events, public lectures, support group meetings, and research partnerships with UCLA Health. Board includes kidney transplant recipients with lived experience: Board President Ravi Bhojwani received a life-saving altruistic donor kidney at age 41 under Dr. Rastogi's care; Board Member Nanette Zumwalt (PKD patient, CEO of Hired Power) received a kidney transplant from a family donor; Chairman Michael Pinsker (founder of Docupace Technologies) is a founding philanthropic supporter. Fiscally sponsored by the Edward Charles Foundation (501(c)(3), EIN: 26-4245043).
• KidneyCAN — Patient-led nonprofit accelerating cures for kidney cancer through research advocacy and funding. Engages patients, caregivers, doctors, and researchers in Capitol Hill advocacy days to urge Congress to increase NIH and CDMRP Kidney Cancer Research Program funding. Offers a Patient Resource Center covering diagnosis, specialist selection, treatment options, clinical trials, and living well with kidney cancer; hosts the annual Kidney Cancer Research Summit (KCRS); and funds direct research grants. Especially active on veteran kidney cancer risk and the PACT Act.
• DPC Education Center (Dialysis Patient Citizens) — The educational arm of Dialysis Patient Citizens, dedicated to improving kidney patients' quality of life through comprehensive CKD and dialysis education. Resources include: detailed guides on hemodialysis, peritoneal dialysis, CAPD, kidney transplant, and post-transplant care; nutrition guides for potassium, phosphorus, and fluid management; a state-by-state resource directory; Spanish-language materials; DPC Kidney Chat online community; The Kidney Citizen magazine; and the Living Well with Kidney Disease podcast. Located at 1001 Connecticut Ave NW, Suite 1230, Washington, DC.
• Kidney Care Partners (KCP) — The nation's largest kidney care coalition — a non-profit alliance of 30+ organizations representing patients, dialysis professionals, nephrologists, nurses, researchers, transplant coordinators, and manufacturers. Advocates for policies improving CKD and ESRD care across prevention, dialysis, and transplant. Produces The State of Kidney Disease in America docuseries featuring real patient and clinician stories. Active on APOL1-mediated kidney disease (AMKD) awareness, health equity, home dialysis expansion, and congressional advocacy on kidney care funding and reimbursement.
• Kidney School (Medical Education Institute) — Free, comprehensive online kidney disease education program run by Medical Education Institute, Inc. (501(c)(3)), offered in English and Spanish. Modular curriculum covers CKD basics, dialysis (hemodialysis and peritoneal), kidney transplant, nutrition, fluid management, coping, and working with your care team. Designed for CKD patients at any stage who want to become informed, active partners in their own care. Modules available at no cost; used by patients, caregivers, and renal professionals nationwide.
• American Transplant Foundation (ATF) — Founded in 2005, the only national organ transplant nonprofit proactively reducing the transplant waitlist through a three-tiered approach: financial assistance (emergency grants to vulnerable recipients and living donors), emotional support (1+1=LIFE Mentorship Program — 350+ trained mentors in 12 languages, one-on-one support for patients, donors, recipients, and caregivers), and education (Potential Living Donor Database with 2,600+ registered donors; living donor and recipient checklists; Transplant Talks Podcast). Has provided $1.25M+ in direct patient and family support. 100% privately funded — no government or pharma money. Focus on equity and eliminating barriers for all transplant patients.
• Cystinosis Research Foundation (CRF) — Research and patient support foundation dedicated to cystinosis — a rare lysosomal storage disorder that progressively destroys kidney function and requires transplant in most patients. Funds clinical trials (including pioneering stem cell and gene therapy trials), an international patient registry (Cure Cystinosis International Registry/CCIR), and grants for researchers. Publishes research updates and holds the International Cystinosis Research Symposium. Based in Irvine, CA. Provides community and education resources for cystinosis patients and families.
• Kidney Donor Athletes (KDA) — Colorado-based 501(c)(3) (EIN: 83-2106951) community of living kidney donors who are athletes — dispelling the myth that donation limits physical activity. Hosts the Donor Games (showcasing fitness of kidney donors), Champions program (peer support since 2019), and First Event Back program (supporting donors' return to athletics post-surgery). Profiles 150+ donor athletes. Runs the After The Gift podcast sharing first-person donor transformation stories. One Kidney Club chapters build local community. Advocates that 95% of donors say they would donate again, and that donation does not prevent an active, athletic lifestyle.
• World Kidney Day (WKD) — Annual global awareness campaign (held each March) co-sponsored by the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). Provides a free online Kidney Knowledge Bank covering CKD basics, dialysis, transplantation, organ donation, diabetes and kidney disease, hypertension, obesity, and health equity. Publishes an annual scientific editorial (2026 theme: 'Kidney Health for All — Caring for People, Protecting the Planet'). Connects patients and clinicians worldwide and tracks global advocacy activities. Includes a kidney health quiz and patient story series.
• Kidney Assist — New York-based nonprofit that assists patients with chronic kidney disease and end-stage kidney failure in finding living donors and navigating the transplant process. Holds the hands of patients and donors from start to finish, educating both parties about what the process entails. Mission is to empower patients and families to draw out altruistic donors — whether family members, friends, or strangers — and turn the disease journey from despair into hope. Success is defined not only by a completed transplant but by the hope generated during the search itself.
• Kidney Research UK — UK's leading kidney disease research charity (Registered Charity No. 252892), offering extensive free patient education resources relevant to all kidney patients globally. Resources include Kidney Community (online forum co-developed with patients and carers for peer connection), a kidney health knowledge library covering CKD stages, treatments, lab results, and living with kidney disease, plus a free magazine and email newsletter. Actively funds research in IgA nephropathy, transplant rejection, CMV vaccination, and BK virus. Particularly useful for U.S. patients seeking independent, non-commercial kidney health education.
• APOL1 Action Alliance (AAA) — Patient-led, community-focused nonprofit dedicated to APOL1-mediated kidney disease — a genetic condition affecting people of African descent. The APOL1 G1 and G2 gene variants (found in ~13% of African Americans) create a 3–5× greater risk of kidney failure; most patients develop disease before age 50 and initiate dialysis nearly a decade earlier than average. Built on four pillars: (1) Patient Education — culturally responsive materials for communities of African descent on APOL1 genetics, disease progression, and treatment; (2) Advocacy — amplifying patient voices at state legislatures and federal health equity coalitions; (3) Community Outreach — meeting patients at HBCUs, faith organizations, and community health centers; (4) Strategic Partnerships — with pharma (Vertex, Maze Therapeutics), academic medical centers, and peer advocacy orgs. Connects patients to ongoing APOL1 clinical trials. Co-founded by Sharron S. Rouse (also founder of Kindness for Kidneys International) and Richard Knight (former AAKP President, 20-year transplant recipient, ASN President's Award recipient).
• Kindness for Kidneys International — International voluntary nonprofit founded December 2, 2018 by Sharron S. Rouse — a Prince George's County, MD native who was diagnosed with kidney failure in 2006 and received a living-donor kidney from her sister on December 2, 2013. Mission: Educate, Encourage, and Empower kidney warriors and their families. Key programs: monthly Kidney Disease Support Group (2nd Sunday, 3:30–4:30 PM ET via Zoom — open to dialysis patients, pre/post-transplant patients, and caregivers; Zoom ID: 640 046 7833); Kidney Konversations (30–60 min in-home or community information sessions on kidney disease and organ donation); Holiday Drive; and national awareness campaigns. Also co-founded the APOL1 Action Alliance with Richard Knight. Contact: info@kindnessforkidneys.org.
• KidneyX — The Kidney Innovation Accelerator — Public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. Runs prize competitions with millions in total awards — including the $4M EMPOWER: Living Link Prize Challenge (developing tools to empower prospective living donors, clinicians, and patients). Aims to benefit the 850M+ people worldwide with kidney diseases. Builds a collaborative ecosystem for researchers, innovators, investors, patients, and care partners. Contact: kidneyx@asn-online.org.
• Patient Access Network (PAN) Foundation — National nonprofit providing disease-specific financial assistance grants to underinsured patients for out-of-pocket medication costs, health insurance premiums, and transportation. Has dedicated kidney disease funds for CKD, FSGS, IgA nephropathy, and other kidney conditions. Services include: co-pay assistance for high-cost kidney drugs, health insurance premium grants (keeping patients insured), transportation grants for medical appointments, FundFinder eligibility tool, and ComPANion Access Navigators (live phone support at 1-866-316-7263). Patients must have a qualifying diagnosis, insurance, and income within program guidelines.
• AZ&Me Prescription Savings Program (AstraZeneca) — AstraZeneca's patient assistance program providing AstraZeneca medications at no cost to eligible patients who cannot afford them. Covers patients without insurance OR Medicare patients who still cannot afford their medications. Key kidney-related medications include: Lokelma (sodium zirconium cyclosilicate) for hyperkalemia in CKD patients. Up to a 90-day supply delivered free to home or doctor's office. Apply online or by fax (1-877-239-0867). Eligibility determined within 2–4 business days. Note: As of May 2026, new Farxiga (dapagliflozin) applications are no longer accepted through this program.
• Alnylam Assist® — OXLUMO Patient Support Program — Patient support program for OXLUMO® (lumasiran), the FDA-approved treatment for Primary Hyperoxaluria Type 1 (PH1) — a rare genetic disorder causing severe kidney stones and progressive kidney damage leading to kidney failure. Alnylam Assist provides: dedicated case managers (within 2 business days of enrollment), commercial copay assistance (for eligible patients with commercial insurance), patient assistance program (free OXLUMO for eligible uninsured patients or those without drug coverage), in-home nursing support for medication administration, and Patient Education Liaisons (PELs) to explain PH1 and treatment. Call 1-833-256-2748 M–F 8AM–6PM ET.
• Kidney Foundation of Greater Chattanooga — Independent local kidney foundation serving the Chattanooga, Tennessee area since 1989, providing financial assistance programs and support services to kidney disease patients and their families. As an independent foundation, 100% of donated funds stay in the Chattanooga community — a key differentiator from national organizations. Focuses on families financially devastated by kidney disease, offering direct local support not available through large national bodies.
• Choose Donation — Living donation education platform from the National Kidney Registry (NKR) that helps prospective donors understand living kidney and liver donation. Covers the full donation journey — screening and testing, the donation process, recovery, and life after donation — alongside extensive donor stories. Features a free, optional Donor Mentor program connecting donor candidates (who sign up through the NKR) with people who have already donated, so they can ask questions and get firsthand insights. Also explains the Voucher/Family Voucher Program and Donor Shield protections (lost wage and expense reimbursement, complication coverage). Donor mentor brochures are available in English and Spanish.
• Fresenius Kidney Care — One of the largest dialysis providers in the U.S., offering extensive patient education on chronic kidney disease (CKD) and end-stage renal disease (ESRD). Its 'Eating Well' resources cover renal diet basics, kidney-friendly recipes and cookbooks, shopping tips, fluid management, and free classes on kidney disease treatments. Also provides home dialysis options, dialysis center locator, and a Kidney Care Community.
• Kidney Nutrition Institute (Kidney Grub) — Renal dietitian–led nutrition practice providing personalized, holistic nutrition counseling to help patients improve kidney function and delay or avoid dialysis. Offers 1:1 counseling, group programs, live and on-demand nutrition classes, meal plans, and kidney-friendly recipes (via Kidney Grub) for CKD, polycystic kidney disease (PKD), autoimmune kidney disease, and diabetes with CKD. Includes free nutrition guides and a knowledge hub for patients and professionals.
• Kidney Patient Guide — UK-based online guide for anyone affected by kidney disease or renal failure. Covers the physical and emotional effects of kidney disease, treatment options, and how kidney disease affects diet (fluid intake, cookbooks, appetite). Includes a patient discussion forum, guidance for carers, information on the financial implications of kidney disease, dialysis-accessible holidays, a glossary, and curated useful links.
• Life Options — Kidney patient education program from the Medical Education Institute focused on helping people live long and well with kidney disease. Provides plain-language information on understanding kidney disease, treatment choices, nutrition, and rehabilitation, with practical tools and booklets to help patients manage their health and stay active on dialysis.
• Abbott Nepro (Nutritional Supplement) — Renal nutritional supplement from Abbott designed for people on dialysis, providing high-quality protein and calories with controlled levels of potassium, phosphorus, and sodium to support the nutritional needs of dialysis patients. The site offers product and nutrition information, kidney-friendly recipes, and purchasing options.
• Kate Farms Renal Care — Plant-based nutritional supplement company whose Renal Care 1.8 formula is designed for the dietary needs of people with kidney disease and those on dialysis, providing concentrated, organic, plant-based protein and calories. The site offers nutrition information, purchasing options, and free samples.
• Kidney Transplant Compare (IPRO ESRD Network) — A free, patient-facing tool from the IPRO End-Stage Renal Disease (ESRD) Network Program (operated under contract with the Centers for Medicare & Medicaid Services) that helps kidney patients and caregivers learn about transplant as a treatment option and choose a transplant center. Users can read transplant education resources, then search, filter, and save transplant centers and compare their saved centers side-by-side using center-specific information to find the best fit. Data focuses on transplant centers in IPRO's current ESRD Network regions (Networks 1, 6, and 9: New England, South Atlantic, and Ohio River Valley) — check the site for current coverage, as ESRD Network contracts change over time. A dedicated Pacific Northwest version is available at nw16transplantcompare.org.
• Enlisted Kidney Foundation (EKF) — A veteran-led 501(c)(3) nonprofit founded by Daniel Holmes — a former Navy Aircrewman (Search and Rescue) diagnosed in 2020 with a rare kidney disease linked to service-related chemical exposure. EKF advocates, connects, mentors, and educates for kidney health with a special focus on veterans, helping them navigate the VA healthcare and benefits system and link service-related toxic exposures to kidney disease under the Honoring our PACT Act of 2022. Programs include 'Coffee & Conversations' (twice-monthly virtual support and education for patients, veterans, and caregivers), the #FilterLIFE membership community, and 'Hill Day' congressional advocacy. The foundation has testified before the FDA, NIH, the National Board of Nephrology, and Congress, and received the 2024 NephCure Impact Award.
• HonorBridge — HonorBridge is North Carolina's largest federally designated, nonprofit organ and tissue donation organization, serving roughly 7.5 million people across 78 North Carolina counties (and parts of Virginia). It partners with hospitals and transplant centers to coordinate deceased organ, eye, and tissue donation. HonorBridge provides donor family support and community education, and encourages donor registration. Its headquarters is at 7000 Millhouse Rd, Chapel Hill, NC 27516.
• Donor Network of Arizona (DNA) — Donor Network of Arizona (DNA) is Arizona's federally designated, nonprofit organ procurement organization (OPO), coordinating organ, eye, and tissue donation statewide. It works with hospitals and transplant centers to facilitate donation, maintains donor registration, and provides donor-family support. DNA offers multicultural community outreach and public education programs to encourage Arizonans to register as donors. Registering as a donor is free.
• DonorConnect — DonorConnect is the organ procurement organization serving the Intermountain West, covering roughly 3.9 million residents and more than 90 hospitals. It coordinates organ, eye, and tissue donation and partners with transplant centers such as Primary Children's Hospital, Intermountain Medical Center, and University of Utah Hospital. The organization supports donor families and promotes donor registration across the region. Its office is in Murray, Utah, and it can be reached by phone or email.
• Indiana Donor Network — Indiana Donor Network is Indiana's federally designated organ procurement organization (OPO), coordinating organ, tissue, and eye donation across the state. It works with hospitals and transplant centers to recover and place donated organs and tissue, supports donor families, and educates communities to encourage donor registration. The organization offers donor-family scholarships and participates in national donation awareness efforts. Its headquarters and organ and tissue recovery center are located on Guion Road in Indianapolis, and it can be reached by phone.
• CORE — Center for Organ Recovery & Education — CORE (Center for Organ Recovery & Education) is a nonprofit organ procurement organization that partners with 150+ hospitals to coordinate the recovery of organs, tissue, and corneas and to facilitate computerized organ matching. It provides donor-family support services and community education to promote donation. CORE is located at 204 Sigma Drive, RIDC Park, Pittsburgh, PA 15238, and can be reached at 412-963-3550 or contactcore@core.org, with a 24/7 donor-referral line at 800-366-6777 (800-DONORS-7).
• OneLegacy — OneLegacy is a nonprofit, federally designated organ procurement organization serving the greater Los Angeles area of Southern California, one of the largest transplant-candidate populations in the country. It coordinates organ, eye, and tissue donation, works with area hospitals, and supports donor families. OneLegacy is known for its multilingual and multicultural community outreach and donor registration efforts. Its corporate office is at 1303 W. Optical Dr, Azusa, CA 91702.
• Donor Alliance — Donor Alliance is the federally designated, nonprofit organ procurement organization (OPO) serving Colorado and most of Wyoming — one of the larger donation service areas in the U.S., covering millions of residents and roughly 100 hospitals. It coordinates organ, eye, and tissue donation, maintains the Donate Life Colorado and Donate Life Wyoming registries, and supports donor families. Donor Alliance provides community education and resources, and registering as a donor is free.
• Louisiana Organ Procurement Agency (LOPA) — The Louisiana Organ Procurement Agency (LOPA) is Louisiana's federally designated organ procurement organization, serving a state with one of the highest rates of end-stage renal disease in the U.S. LOPA coordinates organ, eye, and tissue donation, supports donor families, and provides faith-based and multicultural community outreach and education. It also honors donor heroes through memorial events and a Donor Memorial Park. The public can reach LOPA through its main line or the contact form on its website.
• Alabama Organ Center (UAB Medicine) — Legacy of Hope, formerly known as the Alabama Organ Center, is Alabama's federally designated organ procurement organization (OPO). It coordinates deceased organ and tissue donation statewide, partnering with hospitals and transplant centers to save and heal lives through donation. The organization honors donors and their families and conducts community outreach and education to encourage donor registration across Alabama. It is based in Birmingham and can be reached by phone or through its online contact form.
• LifeQuest Organ Recovery Services — LifeQuest Organ Recovery Services is Florida's organ procurement organization (OPO) for the north-central region, an area with a high chronic-kidney-disease burden. Based in Gainesville and affiliated with the University of Florida, it coordinates deceased organ and tissue donation, provides community education, and promotes donor registration to help meet the need for lifesaving transplants. The organization is located at 720 SW 2nd Avenue, Suite 570, Gainesville, FL and can be reached at 352-338-7133; a contact form is also available on its website.
• OurLegacy — OurLegacy is the federally designated organ and tissue procurement organization serving the greater Orlando region of Central Florida. It describes itself as the caring connection that makes organ and tissue donation possible, coordinating donation, supporting donor families, and partnering with clinical teams. OurLegacy encourages donor registration and provides community education and multicultural outreach. Prospective donors, families, volunteers, and media can reach the organization through the contact form on its website.
• Finger Lakes Donor Recovery Network — Finger Lakes Donor Recovery Network is the federally designated, nonprofit organ procurement organization (OPO) serving western and central New York (outside New York City), including the Rochester and Finger Lakes regions. It coordinates deceased organ and tissue donation between hospitals and transplant centers and honors donor heroes. The organization provides compassionate support to grieving donor families, offers donor-family services and financial-gift information, and leads community education under its Pass Life On initiative. Registering as a donor is free.
• Upstate New York Transplant Services (UNYTS) — Upstate New York Transplant Services (UNYTS), now operating as ConnectLife, is the organ procurement organization serving the Buffalo metropolitan area and surrounding Western New York counties. It coordinates organ, eye, and tissue donation, provides donor family support, and conducts public awareness and community outreach. ConnectLife also operates blood donation services in the region and is distinct from LiveOnNY, which covers New York City. Its headquarters is in Williamsville, New York, and it can be reached by phone or email.
• Pacific Northwest Transplant Bank (PNTB) — Pacific Northwest Transplant Bank (PNTB) was one of the original U.S. organ procurement organizations and now operates as Cascade Life Alliance, coordinating organ and tissue procurement for transplant centers in the Pacific Northwest. Affiliated with OHSU, it partners with hospitals to recover and place donated organs and tissue and supports donor families throughout the process. The organization shares donor and recipient stories and conducts community outreach to raise awareness and increase donor registration. It is based in Portland, Oregon, and can be reached by phone or email.
• Mississippi Organ Recovery Agency (MORA) — Mississippi Organ Recovery Agency (MORA) is Mississippi's federally designated organ procurement organization (OPO), serving a state with among the highest end-stage renal disease (ESRD) rates in the nation. MORA coordinates deceased organ and tissue donation statewide, supports donor families, and provides community education and donor-registration outreach. Questions about donation, volunteering, partnerships, or speaker requests can be submitted through the website contact form or by calling 800-690-8878.
• Renal Physicians Association (RPA) — The Renal Physicians Association (RPA) is the professional association representing nephrologists, nurse practitioners, and physician assistants who care for kidney patients. It advocates for kidney patients and the nephrology community before Congress and CMS, and develops clinical practice guidelines, reimbursement and quality standards, and practice-management resources. RPA also offers membership, meetings, coding and billing guidance, and e-learning. Its office is at 1700 Rockville Pike, Suite 320, Rockville, MD 20852.
• American Nephrology Nurses Association (ANNA) — The American Nephrology Nurses Association (ANNA) is a professional association of thousands of nephrology nurses that advocates for kidney patients across dialysis, transplant, chronic kidney disease (CKD), and acute-care settings. ANNA advances nephrology nursing through education, advocacy, networking, and scholarly activity, and engages Congress and CMS on ESRD and kidney-care policy. It publishes clinical practice resources and standards and participates in kidney-care coalitions. While it serves nurses, its policy and advocacy work directly benefits kidney patients nationwide.
• National MOTTEP (Minority Organ Tissue Transplant Education Program) — Founded in 1991 by Dr. Clive Callender at Howard University, the first national program targeting minority organ donation and transplant education. Addresses the reality that kidney disease is 2–4× more common in minorities, with programs in African American, Hispanic, Asian/Pacific Islander, and Native American communities, and promotes living donation and prevention.
• Association for Multicultural Affairs in Transplantation (AMAT) — Promotes diversity, equity, and inclusion in transplantation, focusing on eliminating disparities in organ donation and transplant access for minority populations who face the longest kidney transplant wait times. Member of the National Minority Donor Awareness Month coalition alongside AKF, NKF, UNOS, and AOPO.
• Vasculitis Foundation — The Vasculitis Foundation supports, inspires, and empowers people living with vasculitis and their families, including patients with ANCA-associated vasculitis (such as GPA and MPA), a leading cause of rapidly progressive kidney failure. It offers disease education, a specialist and center finder, clinical trial listings, an annual patient conference, research funding, and a peer support network. The Foundation also provides free Empowerment Kits for children and teens newly diagnosed with vasculitis. Based in Kansas City, Missouri, it can be reached by phone or through the contact form on its website.
• Lupus Foundation of America (LFA) — The Lupus Foundation of America (LFA) is a national nonprofit dedicated to improving the quality of life for people affected by lupus through research, education, support, and advocacy. Because lupus nephritis affects a large share of lupus patients and is a significant cause of kidney failure—particularly among women of color—LFA maintains a Lupus Nephritis Information Center and related kidney-focused resources. It offers health-education specialists, treatment-guideline webinars, peer connection, and support services, and advocates for research and patient protections at the FDA and in Congress. The Foundation is headquartered in Washington, DC, and can be reached by phone or email.
• Association of Organ Procurement Organizations (AOPO) — The Association of Organ Procurement Organizations (AOPO) is the national membership organization representing the nation's organ procurement organizations (OPOs). It leads the organ-donation community through advocacy, education, and innovation, promoting policies that improve deceased-donation rates, OPO accountability, and equitable organ allocation, and it develops OPO best practices and performance standards. AOPO is based in the Washington, D.C. metro area (McLean, Virginia) and can be reached at 703-556-4242.
• Coalition for Kidney Health — The Coalition for Kidney Health (C4KH) is a multistakeholder coalition, supported by the National Kidney Foundation, focused on the early detection and management of chronic kidney disease (CKD). Its mission is to advance legislation and regulatory policies that improve CKD awareness, expand screening of at-risk patients, and drive high-quality, coordinated care that slows CKD progression. Current priorities include advocating for a USPSTF CKD screening recommendation, broadening adoption of the Kidney Health Evaluation for Adults with Diabetes (KED) measure, and expanding access to kidney disease education and medical nutrition therapy. Organizations can join the coalition through the National Kidney Foundation.
• Fabry Support & Information Group (FSIG) — Fabry disease is a genetic lysosomal storage disorder that can cause progressive kidney failure, often requiring dialysis and transplant. The Fabry Support & Information Group (FSIG) is dedicated to improving the quality of life for patients and families affected by Fabry disease through education, advocacy, peer support, and a compassionate community. FSIG provides resources and programs for every stage of the Fabry journey, including specialist referrals and research updates. Patients and families can reach FSIG by phone, email, or mail at its Missouri office.
• National Kidney Foundation of Illinois (NKFI) — The National Kidney Foundation of Illinois (NKFI) is an independent kidney health organization based at the Tony Noel Center in Chicago that serves kidney patients across Illinois. It provides direct patient services including transplant education, peer mentoring, free kidney health screenings, and patient navigation. NKFI operates with a local program focus and raises funds to improve the lives of Illinois families affected by kidney disease. The organization can be reached by phone, email, or through its website contact form.
• The Kidney Collective — The Kidney Collective is described as a grassroots coalition focused on APOL1-mediated kidney disease (AMKD) and broader kidney health equity for Black Americans, who experience a disproportionately high burden of kidney disease. It conducts community outreach, policy advocacy, and patient education aimed at the populations most affected by kidney disease. The organization partners with kidney-care policy groups to advance equity. (Note: this coalition is distinct from the APOL1 Action Alliance and from the American Kidney Fund's similarly named 'Kidney Collective' podcast.)
• American Society of Transplant Surgeons (ASTS) — The American Society of Transplant Surgeons (ASTS) is a professional association of transplant surgeons that advocates for improved kidney-transplant access, organ-allocation equity, living-donor protections, and OPTN reform. It issues position statements on reducing organ discard and ensuring equitable waitlist access, and it runs a Patient Voice Initiative to incorporate patient perspectives. Based in Arlington, Virginia, ASTS can be reached at 703-414-7870 or asts@asts.org.
• Dent Disease Foundation — Patient advocacy organization for Dent disease — a rare X-linked inherited kidney disorder affecting the proximal renal tubules, causing tubular proteinuria, excess urinary calcium, kidney stones, nephrocalcinosis, and progressive chronic kidney failure. The foundation educates and connects the Dent disease community (Dent 1 and Dent 2) and supports the search for a cure.
• Oxalosis & Hyperoxaluria Foundation (OHF) — A national voluntary organization for hyperoxaluria and related conditions such as oxalosis and calcium-oxalate kidney stones. Informs affected individuals, families, physicians, and medical professionals; supports the primary and enteric hyperoxaluria communities; and advances patient education, peer connection, and research toward better treatments for these rare kidney diseases.
• The Get In Position Foundation, Inc. — A 501(c)(3) nonprofit empowering individuals with kidney disease in underserved communities to take control of their health journey through education, counseling, and personalized support, with the goal of slowing kidney disease progression and raising kidney health awareness. Runs a peer-to-peer mentorship program and produces The Kidney Korner Podcast (hosted by Craig Merritt), a patient-perspective show for people with CKD, those on dialysis, transplant seekers, and healthcare professionals.
• A Kidney Life — A supportive community founded in 2023 by transplant recipient and patient advocate Pesh Patel for individuals diagnosed with kidney disease, those on dialysis, and transplant donors and recipients. Built on the pillars of education, awareness, and advocacy, it offers group discussions, educational resources, and peer support, promoting mental and physical health to improve quality of life for individuals and families affected by kidney disease.
• International Society of Glomerular Disease (ISGD) — A global professional society uniting physicians, researchers, and allied health professionals across adult and pediatric nephrology, pathology, genetics, and immunology to advance glomerular disease research and care. Focuses on rare glomerular conditions such as FSGS, IgA nephropathy, minimal change disease, Alport syndrome, and nephrotic syndrome. Programs include Centers of Excellence certification, clinical trials support, mentorship connecting patients and clinicians with worldwide experts, and the 'GN in Ten' educational podcast.
• American Society of Pediatric Nephrology (ASPN) — The premier U.S. professional organization dedicated to children's kidney health, bringing together pediatric nephrologists, researchers, and healthcare professionals to promote optimal renal care for children through advocacy, education, and research. Publishes the 'KIDney Briefs' newsletter and 'The Sediment' podcast, and supports research and education through the ASPN Foundation.
• International Pediatric Nephrology Association (IPNA) — A global nonprofit of 2,300+ members from 136 countries working to ensure optimal kidney care for all children regardless of economic or political circumstance. Offers extensive educational resources — teaching courses, fellowships, webinars (with audio translation in 50+ languages), the IPNA Curriculum, clinical practice guidelines, and a Sister Centers program. Particularly useful for families traveling internationally: IPNA hosts a 'Find a Pediatric Nephrologist' directory and family-facing patient education covering CKD, nephrotic syndrome, dialysis, and transplantation.
• Edward Lesnick — Living Kidney Donor & Donor Advocate — A living kidney donor who donated through a paired exchange program so his mother could receive a transplant. Edward is available for candid peer-to-peer conversations with prospective donors, donor families, and others interested in learning about his personal experience.
• Jennifer Moore, MS, RDN, CSR, LDN — Renal Dietitian — A Board-Certified Specialist in Renal Nutrition (CSR) with 25+ years serving the kidney community across the full spectrum of chronic kidney disease (stages 1–5), dialysis, transplant, and end-stage renal disease. A Certified Plant-Based Dietitian (Cornell) and author of 'Plant-Fed Kidneys' (practitioner and patient editions), she received the American Association of Kidney Patients' Medal of Excellence (Dietitian Category) in 2020. Jennifer offers telehealth nutrition counseling and accepts insurance through Nourish, and also shares free educational lectures online (Chef AJ Live, The Real Truth About Health, and the Plant-Fed Wellness channel).
• Lindsay Ducharme, RDN, CSR, LDN — Vital Kidney Nutrition — A registered dietitian (since 2009) and Board-Certified Specialist in Renal Nutrition who has focused on kidney care since 2014. Through her telehealth private practice, Vital Kidney Nutrition, Lindsay specializes in medical nutrition therapy for non-dialysis (earlier-stage) chronic kidney disease — helping patients use plant-focused nutrition to slow progression and, where possible, avoid dialysis. She serves patients across the United States and accepts insurance.
• Dr. Sean Hashmi — SELF Principle (Free Kidney Education) — A free educational YouTube channel from nephrologist and obesity-medicine physician Dr. Sean Hashmi, offering practical guidance on kidney health, nutrition, weight management, and overall wellness for patients and caregivers.
• Dr. Shivam Joshi — Plant-Based Kidney Nutrition (Free Talks) — Free educational talks from nephrologist Dr. Shivam Joshi, MD — a plant-based physician at NYU Grossman School of Medicine and recipient of the National Kidney Foundation's Joel D. Kopple Award in renal nutrition. His lectures cover plant-based and plant-dominant nutrition for chronic kidney disease, translating diet-and-kidney research into practical, patient-friendly guidance.
• Kidneyhood.org — Ketoanalogue (Keto Acid) Supplements (Commercial Resource) — A commercial kidney-nutrition store (run by registered dietitian Mathea Ford) that sells Albutrix ketoanalogue (keto acid) supplements — nitrogen-free analogues of essential amino acids sometimes used alongside a low-protein diet to support nutrition in chronic kidney disease — along with kidney-friendly cookbooks and recipes. Listed as a product/education resource, not a nonprofit support organization. Always consult your nephrologist or renal dietitian before starting any supplement.
• Explore Transplant — A research-based patient education program that helps people understand kidney disease, transplant options, and living donation through free, evidence-based materials and real stories from patients and donors. Designed to help patients make informed decisions and pursue transplant when appropriate.
• Scientific Registry of Transplant Recipients (SRTR) — The federally supported registry (operated under contract with the U.S. government, based in Minneapolis) that publishes data and outcome reports for every transplant center and organ procurement organization in the United States. Its patient-friendly website walks candidates and care partners through the entire organ transplant journey — considering a transplant, finding a center, getting listed, and recovery — and offers free decision tools including a Kidney Transplant Decision Tool, kidney transplant waiting-time lookups, a personalized transplant center search using your own medical profile, and side-by-side program comparisons by volume, waiting time, and outcomes. The site does not store or share identifying information from personalized searches.
• Organ Procurement & Transplantation Network (OPTN / HRSA) — The national organ transplantation system that operates under contract with the U.S. Health Resources & Services Administration (HRSA). Provides authoritative patient resources, transplant FAQs, national policies, and information about the transplant waiting list.
• OrganDonor.gov (HRSA) — The official U.S. government website on organ donation and transplantation, managed by HRSA. Offers trustworthy information on living kidney donation, the donation process, and how to register as a donor.
• Living Kidney Donation for Veterans (DOVE) — A program connecting U.S. military veterans who need a kidney transplant with veteran living donors. Veteran recipients and potential donors can register. Founding sponsors include the American Association of Kidney Patients, Wounded Warrior Project, and the National Kidney Registry.
• Project Donor — A nonprofit that helps prospective living kidney donors overcome health barriers — such as weight, smoking, or mental health — so they can qualify to donate. By supporting candidates through these hurdles, Project Donor expands the pool of potential living donors.
• Transplant Journey — A nonprofit offering education, resources, and support to help patients and families navigate the organ transplant journey — from evaluation and waiting through surgery and life after transplant.
• ReMend — An online support community providing peer mentoring for people living with chronic kidney disease (CKD) or end-stage renal disease (ESRD), affiliated with Balboa Nephrology in San Diego. ReMend connects patients with trained mentors — other kidney patients who have been through the journey — and offers an 'Ask a Mentor' service, a Renal Roundtable, webinars, kidney-friendly recipes, and resources to help patients build resiliency and make informed choices about their kidney health.
• Rogosin Institute for Kidney Care — A New York City-based nonprofit kidney care and research institute providing diagnosis, treatment, and management of kidney disease since 1983. Hosts a patient support group; contact Barbara Desiderio, LCSW to receive the meeting link.
• Find a Renal Dietitian — Academy of Nutrition and Dietetics (Renal DPG) — The Renal Dietitians practice group of the Academy of Nutrition and Dietetics, which connects kidney-nutrition specialists nationwide and offers a 'Find a Renal Dietitian' directory to help patients locate a dietitian who specializes in kidney disease.
• Kellsey Reed, RDN, LDN — CKD Nutrition — A private dietitian practice. Kellsey Reed is a registered dietitian nutritionist specializing in chronic kidney disease, offering nutrition counseling and practical, kidney-friendly education to help patients manage their diet. Listed as a professional/private service (fees may apply), not a nonprofit support organization.
• Melanie Betz, MA, RD, CSR, FNKR, FAND — The Kidney Dietitian — A private dietitian practice. Melanie Betz is a Board-Certified Specialist in Renal Nutrition offering evidence-based kidney nutrition guidance for chronic kidney disease and kidney stones through one-on-one counseling, online courses, and a widely read educational blog. Listed as a professional/private service (some offerings are free; counseling fees may apply), not a nonprofit support organization.
• Help Hope Live — A nonprofit providing community-based medical fundraising for transplant and catastrophic-injury patients. Unlike personal crowdfunding, funds are managed by the charity and are typically structured so they are not counted as personal income — which can help protect need-based benefits such as Medicaid and SSI. Confirm your specific situation with a benefits counselor or the relevant agency.
• Georgia Transplant Foundation — A nonprofit supporting Georgia organ transplant candidates, recipients, living donors, and families through financial assistance (including medication and living-donor expense grants), education, mentoring, and life-skills programs.
• TSC Alliance (Tuberous Sclerosis Complex) — The national organization dedicated to tuberous sclerosis complex (TSC), a genetic condition that can cause kidney angiomyolipomas and cysts. Provides disease education, research funding, advocacy, and community support for affected individuals and families.
• aHUS Alliance — A global, volunteer-run advocacy organization for atypical hemolytic uremic syndrome (aHUS), a rare disease that can cause acute kidney failure. Provides disease information, research and clinical-trial updates, and connects patients and families worldwide.
• Rare Kidney Disease Foundation — A foundation providing hope, education, and support for families affected by rare kidney diseases, including autosomal dominant tubulointerstitial kidney disease (ADTKD). Offers disease awareness, family support, and research advocacy.
• Medicare — Kidney Transplant & Dialysis Coverage (Medicare.gov) — Official U.S. government information on Medicare coverage for kidney transplants, dialysis, and immunosuppressive drugs — including the special ESRD Medicare eligibility that allows people of any age with kidney failure to qualify for coverage.
• RSN Annual Essay Contest (Renal Support Network) — A long-running annual writing contest run by the Renal Support Network (RSN) inviting people affected by kidney disease to share their personal stories. The 24th Annual Contest theme is 'Treatment Choice Experience: What worked, what didn't and where are you now?' — entrants describe a treatment they received, what happened, and a lesson that can help others. Essays must be typed and no more than 750 words, submitted by email by the August 10 deadline, with winners announced in September. Cash prizes are awarded (First Place $500, Second Place $300, Third Place $100), and winning essays are featured in RSN's KidneyTalk Magazine and on RSNHope.org. See the contest page for full rules and how to enter.
• Letters of Hope — Docuseries (Valen Keefer) — A free 12-part docuseries created by patient advocate and two-time transplant recipient Valen Keefer on the trials and triumphs of transplantation. Episodes cover receiving a diagnosis, finding your voice, the transplant waitlist, surgery and recovery, living immunosuppressed, relationships and family planning, and mental health — sharing both patient and caregiver perspectives. Honored with Donate Life Hollywood's Inspire Award.
• Unpacking the Gift of Life — Podcast (Valen Keefer) — A free podcast hosted by Valen Keefer exploring the rare kidney disease and transplant journey with hope and honesty. Episodes blend personal stories, expert advice, and heartfelt reflections on topics like mental health and chronic illness, family planning, building a care team, finding your advocacy voice, caregiver support, and participating in rare disease research — for patients, caregivers, and healthcare professionals alike.
• Valen Keefer — PKD & Organ Donation Advocate — The personal site of Valen Keefer, an award-winning patient advocate, speaker, and writer living with polycystic kidney disease (PKD) and a two-time organ (kidney and liver) transplant recipient. A hub for her two decades of advocacy work, including 250+ articles and blogs, public speaking, the Letters of Hope docuseries, and the Unpacking the Gift of Life podcast — sharing lived experience to educate and empower the kidney, transplant, and chronic illness communities.
• Improving Renal Outcomes Collaborative (IROC) — A network-based learning health system that partners patients and families with clinicians and researchers from leading pediatric institutions to improve health, longevity, and quality of life for children with kidney disease and kidney transplants. IROC shares data, applies quality-improvement methods, and disseminates research across its multi-center network. Its IROC Family Partners program brings the patient and family voice into every workgroup and advocates for families facing chronic kidney disease.
• Transplant Medication Navigator — A free, patient-built tool that helps organ transplant recipients and care partners find affordable or free medications. It guides users through Patient Assistance Programs (PAPs) for immunosuppressants like tacrolimus and mycophenolate, compares drug prices, and points to copay foundations and grants. It also explains how Medicare, Medicaid, and other insurance coverage works for transplant meds. The site does not save, sell, or ask for personal information — it exists purely to educate patients about their options. Always confirm details with your transplant team.
• ESRD Medicare Calculator — A free interactive calculator that helps people with End-Stage Renal Disease (ESRD) estimate their Medicare eligibility, the start of coverage, and the 30-month coordination-of-benefits period between employer insurance and Medicare. Built by a transplant social worker, it translates complex ESRD Medicare rules into clear, step-by-step guidance for dialysis and kidney transplant patients (available in English and Spanish). It provides educational information only — confirm specifics with your care team, social worker, or Medicare.
• Transplant Teenz — A nationwide virtual peer support community for teen organ transplant recipients (grades 7–12), including kidney recipients. Founded by a young transplant recipient and facilitated by a clinical psychologist, it follows a 'Heal, Thrive, Launch' model that helps teens connect with peers who understand their experience, learn about transplant life (medication management, nutrition, mental health), hear from inspiring speakers, and enjoy social events like game and movie nights. Endorsed by Transplant Families and listed by the National Organization for Rare Disorders (NORD).
• The Nephrotic Syndrome Foundation (NSF) — A nonprofit supporting people diagnosed with nephrotic syndrome, their families, and the search for a cure. Its For Patients page brings together patient programs including community and emotional support, a peer team for kids and young adults, healthy eating education, patient grants, Camp NSF, Backpacks of Hope, Little Angels, and a podcast. NSF also shares virtual and in-person volunteer opportunities and an Upcoming Events calendar. NSF is currently seeking pediatric patients and young adults up to age 25 for the next Q4 round of Backpacks of Hope, which provides newly diagnosed families with educational materials, medical supplies, comfort items, and connection to the community. A fiscally sponsored 501(c)(3) project of Social Good Fund.
• Seniors Helping Seniors — San Jose, CA — A local provider of non-medical, in-home senior care that pairs active, mature caregivers with older adults who need extra help at home. While not kidney-specific, it can support elderly kidney and dialysis patients with companionship, assistance with daily living, diet-specific meal preparation and grocery shopping, transportation and errands (such as rides to dialysis or appointments), and respite care for family caregivers. Part of the national Seniors Helping Seniors franchise; this listing serves the San Jose and Santa Clara County area.
• Cold Ischemia Foundation — An independent advocacy platform built by and for kidney care partners (the family members and caregivers supporting people with kidney disease and transplant patients), founded by Jeff and Marie Parke in Ellenton, Florida. It takes no pharmaceutical funding and focuses on the gaps care partners face in the dialysis and transplant system. The platform offers AI-powered advocacy tools, a federal complaint generator with exact CFR citations, live federal policy monitoring (CMS, GAO, HHS, OIG, the Federal Register), a Congress scorecard, and an 'Accountability Atlas' directory of agency, ESRD Network, and oversight-body contacts. A free 'First 24 Hours' crisis guide is available with no signup; full platform access is a paid membership ($15/month). Note: the foundation describes its content as advocacy information, not medical or legal advice — confirm any care decisions with your care team.
• More Person Than Patient (Book by Gwen Mayes) — A book by patient advocate Gwen Mayes, JD, MMSc — a lawyer, former physician assistant, and health policy expert who has lived with a genetic heart condition since birth. Subtitled 'Finding Your Purpose and Power with Chronic Illness' and published by Mayo Clinic Press (release November 3, 2026), it addresses the emotional and mental-health challenges of living with chronic illness and caring for someone who does. Drawing on the author's own experience and interviews with 40+ patients and patient advocates, it offers practical tools, journaling prompts, and patient stories for building emotional resilience, reclaiming hope, and navigating the healthcare system. Not kidney-specific, but a useful resource for kidney patients and care partners coping with the emotional weight of chronic illness. Available for pre-order.
• A Gifted Tome: The 40-Day Spiritual Fast for Dialysis Patients (Book by Troy Snead Sr.) — A faith-based daily devotional written specifically for dialysis patients by Troy Snead Sr.—a U.S. Marine Corps veteran, entrepreneur, dialysis patient, and founder of Dialysis Disciples. Structured as a 40-day spiritual journey, each day's reading offers reflections, prayers, and meditations to build daily strength, peace, hope, and resilience while living with kidney disease. Drawing on the author's own experience navigating life on dialysis, it provides an intimate, encouraging companion for patients and their families. Available in paperback, hardcover, and Kindle editions.
• Bonus Days Magazine — A patient-led print magazine created by a heart transplant recipient for transplant and chronic-illness patients, their families, organ donors, and donor families. Each issue shares inspiring real-life stories meant to restore hope alongside recurring features such as a 'While You Wait' section, dietitian-created recipes, and an expanded resource guide. Designed as a tangible, screen-free companion to be read in waiting rooms, hospital beds, dialysis chairs, and infusion centers, it can be purchased individually by patients or in bulk by dialysis and transplant centers for their patients. While the magazine spans all transplant and chronic illness, its stories, recipes, and resources are relevant to kidney patients and care partners. A self-funded project; contact for bulk rates and partnerships.
• 34 Lives — A mission-driven public benefit corporation based in the Purdue Research Park in West Lafayette, Indiana, working to reduce the number of viable donor kidneys that are discarded each year. Its name refers to the roughly 34 people removed from the transplant waitlist every day due to disease progression or death. 34 Lives focuses on evaluating, optimizing, and recovering deceased-donor kidneys that might otherwise be thrown away — addressing organ discards, cold-ischemia challenges, and transplant logistics — so that more kidneys can reach the patients who need them. A resource for patients and families interested in the science and advocacy behind reducing kidney discards.
• Kidney Transplant Connectors — A peer-education program (sponsored by Sanofi) in which a living donor and a transplant recipient come together to share their personal journeys with people considering a kidney transplant and their loved ones. Offered both in person and as a live webinar, and available in English or Spanish, each session covers self-advocacy, considering all options to help reduce time on the waitlist, tips for preparing before, during, and after the procedure, and education about transplant options. Programs are made available through transplant centers.
• Resources to Support Underserved and Undocumented Patients (Handout) — A practical resource guide—an excellent handout for social workers, case managers, and care teams—compiling support options for underserved and undocumented kidney patients. It points to prescription and medication assistance, patient-information help lines (such as NKF Cares, available in English and Spanish), and other programs, with clear labeling of which sections apply to undocumented individuals, underserved U.S. citizens, or both. A free, downloadable PDF for anyone helping vulnerable kidney patients navigate care and coverage barriers.
• IPRO ESRD Network Program — The End-Stage Renal Disease (ESRD) Network organization holding the CMS contract for Networks 1, 6, and 9 — New England, the South Atlantic (GA, NC, SC), and the Ohio River Valley (IN, KY, OH). The Network helps dialysis patients understand their rights, file and resolve grievances and concerns about their care, access patient education, and benefits from quality-improvement work with dialysis facilities. Patients and families can call the ESRD patient line for help with dialysis-related concerns. (Distinct from IPRO's 'Kidney Transplant Compare' tool, which is also listed in this directory.)
• Organ Transplants and Black/African Americans (HHS Office of Minority Health) — A U.S. Department of Health & Human Services (Office of Minority Health) resource page on organ transplantation and Black/African American patients. It documents the disparities Black patients face—making up a disproportionate share of the kidney transplant waiting list relative to the population, with lower donation and graft-survival figures—and provides education and data to raise awareness about the need for organ donation and equitable transplant access. A trustworthy, government source for patients, families, and advocates working on transplant equity.
• National Hispanic Medical Association (NHMA) — A nonprofit association founded in 1994 and based in Washington, DC, representing tens of thousands of licensed Hispanic physicians in the United States. Its mission is to empower Hispanic physicians to improve the health of Hispanic and other underserved populations through collaboration with state medical societies, residents, medical students, and public and private partners. Not kidney-specific, but a relevant advocacy and health-equity organization for Hispanic and underserved patients—including those affected by kidney disease—and for clinicians seeking culturally informed care and partnerships.
• Sanofi Partners in Transplant — Sanofi's kidney transplant resource hub for patients, potential donors, and providers, offering educational content and programs to support people through the transplant journey. It serves as the home for Sanofi-sponsored patient initiatives such as the Kidney Transplant Connectors peer-education program and provides resources on self-advocacy, transplant options, and preparing for and living after transplant. Created by a pharmaceutical company; use alongside guidance from your own care team.
• Living on Dialysis (Facebook Community) — An online Facebook community for people living on dialysis, along with their families and caregivers. It offers a space for peer support, encouragement, and the day-to-day camaraderie of connecting with others who understand life on dialysis — sharing experiences, tips, and emotional support. As with most patient communities of this kind, content reflects members' personal experiences rather than medical guidance, so confirm any treatment questions with your care team.
• Thrive with Peritoneal Dialysis — An education and support resource focused specifically on peritoneal dialysis (PD), created alongside patients, caregivers, and clinicians. It offers clear, plain-language guidance on what PD is, how it works, getting diagnosed, catheter care, treatment options, and fitting dialysis into everyday life, with dedicated paths for both patients and caregivers. The site is run by a commercial company that also sells PD comfort and daily-living products through an online shop, so some links lead to paid products; the educational content reflects lived experience and general information rather than medical advice, so confirm any treatment questions with your own care team.
• Early Steps to Transplant Access Registry (E-STAR) — A kidney-transplant-access research registry based in Indianapolis that studies the early steps dialysis patients take toward getting a transplant — referral, evaluation, and waitlisting — and where gaps in access appear. It publishes the free, public E-STAR Annual Data Report with plain-language data on transplant access across participating U.S. regions and dialysis facilities, and runs the RaDIANT study. This is a data, research, and education resource for patients, caregivers, advocates, and care teams working to close transplant-access gaps; it is not a direct patient-service or financial-aid program.
• National Kidney Foundation of Louisiana (NKFL) — A statewide nonprofit health organization dedicated to preventing kidney disease and improving the health and well-being of Louisiana residents affected by it. Offers patient advocacy, education, and support programs, and works to increase organ availability for transplantation. A regional resource for patients, families, and care partners in Louisiana.
• Nora's Home — A nonprofit hospitality home that provides affordable lodging and a supportive community for solid-organ transplant patients (including kidney) and their families receiving care in the Texas Medical Center. Rooms cost the home about $75/night to operate, but guests are billed on a sliding scale based on ability to pay (averaging roughly $37/night for families), and no one is turned away for inability to pay — so plan to confirm your rate via their referral form rather than assuming it is free.
• Kidney Disease Support Group — A peer-run Facebook support group focused on dialysis patient support and motivation, where members living with kidney disease and on dialysis share encouragement and day-to-day support with one another. Content is member-generated peer support from patients and caregivers — it is not medical advice, so confirm any treatment questions with your own care team. You will need a Facebook account and may need to request to join.
• I Hate Dialysis (Facebook Group) — Established in 2009, I Hate Dialysis is a peer-run Facebook support group for people affected by dialysis and kidney disease. It provides a welcoming space to share experiences, discuss challenges, celebrate victories, ask questions, and connect with others who understand the realities of living with kidney disease and dialysis. Content is generated by patients, family members, and caregivers for peer support and should not be considered medical advice. Always consult your healthcare team regarding treatment decisions. A Facebook account is required, and membership approval is necessary.
• Nephro Warriors — Nephro Warriors is a California nonprofit public benefit corporation founded by a kidney patient living with end-stage renal disease (ESRD), offering grassroots advocacy, education, resources, and peer mentorship to help kidney patients, care partners, and the veteran community navigate their journey. (The founder is not a veteran himself; the organization supports the veteran community.) Its programs — including Battle Buddies (peer mentorship) and Nephro Corps — focus on dispelling misconceptions about dialysis modalities (including home dialysis) and raising awareness of the need for living kidney donation, all grounded in lived experience. Note: the organization states it is currently seeking fiscal sponsorship to operate as a 501(c)(3) charitable program, so it is not yet a registered 501(c)(3).
• Kidney Ally — Kidney Ally is a commercial digital-health platform and mobile app for people with chronic kidney disease (CKD), built to help patients track nutrition, monitor kidney health, and receive personalised dietary guidance. It was founded by Ruth Kander, an experienced renal dietitian (Clinical Director), Carl Juresic, a kidney transplant patient with lived experience (CEO), and Matthew Walton (CTO), combining clinical dietetic expertise with real-world patient experience. It also offers kidney-friendly recipes and a paid Kidney Diet Course. Note: this is a paid/freemium product, not a free service — confirm current pricing and what is included before signing up, and treat its guidance as a self-management tool rather than a substitute for your own care team.
• Alport Syndrome Foundation — Facebook Support Group — The official Facebook support group of the Alport Syndrome Foundation (alportsyndrome.org), a patient-led, registered 501(c)(3) nonprofit. It offers a supportive, judgement-free space for people affected by Alport syndrome — a rare genetic kidney disease — and their families to connect with fellow patients, share experiences, and ask questions. Content is member-generated peer support, not medical advice, so confirm any treatment questions with your own care team. You will need a Facebook account and may need to request to join.
• Transplant Families — Transplant Families is a 501(c)(3) nonprofit that unites families navigating pediatric solid organ (including kidney) and bone marrow transplants, describing itself as the only pediatric nonprofit linking heart, liver, kidney, and bone marrow transplant patients and their families. It offers peer and caregiver support, education, and resources for every stage — before, during, and after transplant — including moderated caregiver support sessions, school-reintegration and early-intervention resources, connections to free travel and lodging assistance, financial-support resources, and advocacy to keep pediatric transplant care accessible. The organization has united with the Children's Organ Transplant Association (COTA), and all current programs continue.
• Alex Berrios — Kidney Patient Coaching — A paid one-on-one coaching service from Alex Berrios, a two-time kidney transplant recipient, kidney patient advocate, and speaker based in Louisville, Kentucky. Through private video-call sessions (around $60 per hour), he offers peer guidance, education, and emotional support to patients and caregivers navigating a new chronic kidney disease (CKD) or end-stage renal disease (ESRD) diagnosis, dialysis, transplantation, and life after transplant. This is paid, lived-experience coaching from a fellow patient — not medical advice or a substitute for your own care team; confirm current session types and pricing before booking.
• American Society of Transplantation (AST) — The American Society of Transplantation (AST) is the largest professional society for transplantation in North America, with 5,000+ transplant professionals across 50+ countries. Founded in 1982, it advances the field through research, professional education, advocacy, public awareness of organ donation, and community service, and publishes the American Journal of Transplantation. It also offers patient- and caregiver-facing educational resources on kidney and other organ transplantation. Note: AST is primarily a membership organization for transplant clinicians and researchers rather than a direct patient-support service — its patient education materials are a helpful supplement to, not a substitute for, your own transplant care team.
• Risa Simon — Books for Kidney Patients — A collection of self-help books by Risa Simon, a 2010 preemptive living-donor kidney transplant recipient, speaker, and patient advocate. Her titles include 'Shift Your Fate: Life-Changing Wisdom for Proactive Kidney Patients' (first published 2012, revised 2016), 'In Pursuit of a Better Life: The Ultimate Guide for Finding Living Kidney Donors', and the children's book 'Sydney's Kidney Adventure'. The books focus on proactive self-advocacy, pursuing a preemptive (before-dialysis) living-donor transplant, and finding a living donor — some include sample letters, conversation scripts, and talking points. The books are sold on Amazon (paid). Simon also founded the nonprofit TransplantFirst Academy (transplantfirst.org). These books share lived experience and guidance and are not a substitute for advice from your own transplant care team.
• Having Your Donor Find YOU! (Living Kidney Donors Network) — A free video-based program from Harvey Mysel, a two-time living-donor kidney transplant recipient and founder of the nonprofit Living Kidney Donors Network (LKDN). The series of short videos (each only a few minutes) teaches kidney patients how to share their need for a living donor and run an outreach campaign so that a potential donor can come forward — rather than having to directly ask someone. A trailer can be viewed without registering; free registration is required to watch the full video series and access the supporting resources. A Spanish-language version is available.
• Transplant Advocate Partners (TAP) — Transplant Advocate Partners (TAP) is a patient-partner program within the PCORI-funded PARTNER AD3vance project, led by the Starzl Network for Excellence in Pediatric Transplantation in collaboration with UPMC Children's Hospital of Pittsburgh, UCSF Benioff Children's Hospital, and partner networks. TAP trains adolescents and young adults who received solid-organ transplants as children (including kidney recipients) to serve as advocates and patient-partners in patient-centered outcomes research, mentoring, and health policy. It is a close collaboration among four pediatric transplant organizations: Transplant Families (a parent-led advocacy organization), the ACTION Learning Network (pediatric heart transplant), IROC — the Improving Renal Outcomes Collaborative (pediatric kidney transplant) — and the Starzl Network (pediatric transplant research and innovation). Members meet virtually each month for leadership training and represent the patient/recipient voice at partner network meetings and conferences. As a research-and-advocacy training program rather than a direct patient-support service, TAP is best suited to patients and families interested in getting involved in transplant advocacy and research.
• All Kidney Patient Support Group (AKPSG) — All Kidney Patient Support Group (AKPSG) is a nonprofit organization established in 2009 to support kidney patients in the Tampa Bay Area and beyond at various stages of kidney disease and transplantation. It describes itself as a patient-centered, peer organization that provides non-medical support to those in need. Its free support group meetings are open to individuals and family members experiencing chronic kidney disease at any stage, including those undergoing dialysis or navigating transplantation. The group also hosts community events (such as film screenings) and welcomes volunteers.
• Parents of Kidney Kids — A peer-run Facebook support group for parents and family caregivers of children with kidney disease. It offers a space to connect with other parents who understand the day-to-day realities of caring for a child with kidney disease — sharing experiences, encouragement, and practical caregiving tips. Content is member-generated peer support from parents and caregivers, not medical advice, so confirm any treatment questions with your child's care team. You will need a Facebook account and may need to request to join.
• Bradford Kidney Patients Association (Bradford KPA) — A patient-led charity founded in 2024 by Sofia Tsanou — a kidney patient on dialysis awaiting a kidney-pancreas transplant — and her mother Michaela Smith, after finding no local support groups existed in Bradford. It supports people living with kidney failure and their families with peer support, information, and community: organized day trips (free for patients; a small fee of about £5 applies for accompanying family members), rechargeable fans for patients on dialysis in warm months, and Christmas gift bags distributed to renal patients across Bradford and Skipton. Membership is completely free and open to patients and their wider families. The charity received an award from the National Kidney Federation in 2026.
• Embark Awareness — A kidney health awareness initiative focused on a stark disparity: African Americans make up about 13% of the U.S. population but 35% of those living with kidney failure — roughly three times the risk of other groups. Embark Awareness works to combat this through education, early detection, community screening, and research. It hosts free community kidney screening events (open to individuals, families, and friends) that include a free consultation with an on-site kidney doctor to discuss results, and it maintains a research registry that people with proteinuric kidney disease or high genetic risk can join to support research into kidney disease in African American communities. The initiative is affiliated with GlomCon (the Glomerular Disease Study & Trial Consortium).
• East Tennessee Kidney Foundation (ETKF) — A local, community-driven 501(c)(3) nonprofit established in 2010 that funds programs making kidney care more accessible and affordable across East Tennessee. Its four patient programs include the Dianne Hagey Dialysis Transportation Program (helps cover transportation costs for patients attending dialysis), a Nutritional Supplement Program (works with 48 dialysis clinics to provide patients with kidney-friendly Pure Protein bars), a Dental Assistance Program (partnered with Trinity Dental Clinic to provide low-cost — not free — dental care to kidney patients), and the Blount County Dental Health Collaboration Program. ETKF also offers kidney disease education, patient spotlights, and community fundraising events. The foundation's assistance programs are provided at no charge to patients; dental care through the partner clinic is offered at reduced (low) cost.
• Kidney Care Coaches — A coaching service founded by Coach Tifiro Cook — himself living with kidney disease — that helps kidney disease and kidney failure patients thrive at every stage. Services include one-to-one coaching and group coaching focused on health-goal accountability, lifestyle guidance, and navigating life with kidney disease, with the aim of working as a team alongside physicians, hospitals, and dialysis centers. The initial consultation is complimentary, but ongoing coaching is a paid service (pricing is not published on the website — confirm fees directly before committing).
• Kidney Connective — A new platform working to put America's transplant center eligibility criteria in one place for patients and living donors — information the platform says has not previously been gathered publicly in one place. Patients join a waitlist to receive personalized transplant center matches based on their clinical profile, eligibility, and preferences; donors get a map of where they qualify, expected evaluation timelines, and realistic costs. Built by founders with lived patient experience (including a kidney patient and patient advocate) and professional expertise from the dialysis and transplant world. Note: the platform is in an early waitlist stage — joining the waitlist is free, but patient-facing pricing for the full service has not been published, so confirm costs directly.
• National Alliance for Caregiving (NAC) — A national nonprofit dedicated to advancing family caregiving through research, advocacy, and innovation — translating the lived experience of family caregivers into policy, system, and culture change. While not kidney-specific, NAC runs a Transplant Caregiving Collaborative focused on building better support for family caregivers in transplant care, making it especially relevant for those caring for kidney transplant recipients and candidates. Offers free caregiver resources including guidebooks for caregivers, the Take Care community, condition-specific research, landmark 'Caregiving in the US' reports, and advocacy toolkits. Also leads national policy work on caregiver support (e.g., Older Americans Act reauthorization).
• C3G Warriors (Facebook Group) — A patient-led Facebook support group connecting a global network of people affected by C3 glomerulopathy (C3G) and immune complex membranoproliferative glomerulonephritis (IC-MPGN) — two rare kidney diseases — along with their caregivers and advocates. Members find peers who offer support and guidance in navigating these challenging conditions, plus news, educational materials, and other community-shared resources. As with most patient communities of this kind, content reflects members' personal experiences rather than medical guidance, so confirm any treatment questions with your care team.
• National Forum of ESRD Networks — The membership organization for all 18 regional End-Stage Renal Disease (ESRD) Networks that monitor the quality of chronic kidney disease, dialysis, and kidney transplant care across the United States under contract with the Centers for Medicare & Medicaid Services (CMS). For patients, the Forum offers free downloadable patient toolkits (esrdnetworks.org/toolkits/patient-toolkits) — including 'Is A Kidney Transplant Right for Me?', Financial Help Resources, the Dialysis Patient Depression Toolkit, and the Dialysis Patient Grievance Toolkit — plus educational webinars for and by patients hosted by its Kidney Patient Advisory Council (KPAC), such as the 2026 KPAC Summer Webinar Series, along with KPAC newsletters and a contact directory of all 18 regional ESRD Networks so patients can find and reach the Network serving their state (each Network helps with grievances, patient rights, and education).
• KHARES — Kidney Health Analytics & Responsive Emergency Support — Kidney Health Analytics & Responsive Emergency Support (KHARES) is a CMS-contracted program that manages national emergency preparedness for dialysis and kidney-failure patients, coordinates data analytics, and supports the 18 regional End-Stage Renal Disease (ESRD) Networks as a unified emergency-response partnership. During disasters (hurricanes, wildfires, outages), this work helps ensure dialysis patients can find open facilities and continue life-sustaining treatment. Most patient-facing help flows through the regional ESRD Networks and IPRO's emergency resources (such as the Healthcare Emergency Hub), so patients in an emergency should contact their regional ESRD Network.
• Quality Insights ESRD Networks (Networks 2, 3, 4, 5, 10, 11, 12) — The End-Stage Renal Disease (ESRD) Network organization holding the CMS contract for seven regional Networks: Network 2 (New York), Network 3 (New Jersey, Puerto Rico, U.S. Virgin Islands), Network 4 (Delaware, Pennsylvania), Network 5 (D.C., Maryland, Virginia, West Virginia), Network 10 (Illinois), Network 11 (Michigan, Minnesota, North Dakota, South Dakota, Wisconsin), and Network 12 (Iowa, Kansas, Missouri, Nebraska). ESRD Networks help dialysis and kidney-failure patients understand their rights, file and resolve grievances about their care, access patient education, and drive quality improvement in dialysis facilities — all free services under contract with the Centers for Medicare & Medicaid Services (CMS).
• Alliant Health Solutions ESRD Networks (Networks 7, 8, 13, 14) — The End-Stage Renal Disease (ESRD) Network organization holding the CMS contract for four regional Networks: Network 7 (Florida), Network 8 (Alabama, Mississippi, Tennessee), Network 13 (Arkansas, Louisiana, Oklahoma), and Network 14 (Texas). ESRD Networks help dialysis and kidney-failure patients understand their rights, file and resolve grievances about their care, access patient education, and drive quality improvement in dialysis facilities — all free services under contract with the Centers for Medicare & Medicaid Services (CMS).
• Qsource ESRD Networks (Networks 16, 17) — The End-Stage Renal Disease (ESRD) Network organization holding the CMS contract for two regional Networks: Network 16 (Alaska, Idaho, Montana, Oregon, Washington) and Network 17 (American Samoa, Guam, Hawaii, Northern California, Northern Mariana Islands). ESRD Networks help dialysis and kidney-failure patients understand their rights, file and resolve grievances about their care, access patient education, and drive quality improvement in dialysis facilities — all free services under contract with the Centers for Medicare & Medicaid Services (CMS).
• Comagine Health ESRD Networks (Networks 15, 18) — The End-Stage Renal Disease (ESRD) Network organization holding the CMS contract for two regional Networks: Network 15 (Arizona, Colorado, New Mexico, Nevada, Utah, Wyoming) and Network 18 (Southern California). ESRD Networks help dialysis and kidney-failure patients understand their rights, file and resolve grievances about their care, access patient education, and drive quality improvement in dialysis facilities — all free services under contract with the Centers for Medicare & Medicaid Services (CMS).
• GlomCon Network — A free online community from the GlomCon Foundation (Glomerular Disease Study & Trial Consortium) that connects patients, caregivers, kidney disease specialists, and nephrology trainees. Patients and caregivers can exchange experiences, identify local support, share resources, and use the network to find kidney disease specialists or clinical trial opportunities in their area. The community describes itself as a private and safe space: patient and caregiver profiles are not displayed or findable in the member directory, and employees of pharmaceutical, biotech, marketing, financial, and related industries are barred from joining due to conflict of interest. Membership requires a request-to-join application. Affiliated with GlomCon's broader education and research programs for glomerular and other rare kidney diseases.
• TotalAssist (Patient Advocate Foundation) — The financial assistance arm of the Patient Advocate Foundation. TotalAssist provides grants that help patients with medication costs, health insurance premiums, and other healthcare expenses through disease-specific funds. Patients search by disease or medication name to find their fund and check eligibility, then apply online or by phone. Fund availability opens and closes over time — patients can sign up to be notified when a fund opens (FundFinder). Information is also available in Spanish.
• NeedyMeds — A national nonprofit dedicated to improving access to affordable healthcare. Maintains searchable databases of patient assistance programs (free or discounted medicines from manufacturers), diagnosis-based assistance programs, affordable health clinics (medical, dental, behavioral health), and printable coupons, rebates, and savings cards. Also offers a free drug discount card and a drug pricing calculator to compare pharmacy prices. Useful for kidney patients trying to lower the cost of prescriptions and care.
• Good Days — A national charitable organization that, in its own words, lifts the burdens of chronic illness through assistance, advocacy, and education. Provides financial assistance for life-saving and life-extending treatments to patients who cannot afford them, across a list of covered diseases. Patients can check whether they qualify, apply online, and re-enroll each year. The organization states that 93% of every dollar raised goes to patients.
• The Assistance Fund (TAF) — An independent charitable foundation that helps patients with chronic and serious diseases cover copays and other out-of-pocket medication costs, so cost doesn't stand between patients and the treatments they need. Operates disease-specific assistance programs — patients check the list of covered diseases and eligibility criteria, then apply online or by phone. Existing enrollees re-enroll annually.
• RxAssist — A comprehensive online directory of patient assistance programs — programs run by pharmaceutical companies to provide free medications to people who cannot afford them. Offers a searchable database, practical tools, news, and articles for both patients and healthcare professionals, plus information about free and low-cost medicine programs and other ways to manage medication costs. Includes a free printable drug discount coupon.
• 988 Suicide & Crisis Lifeline — The national mental health crisis lifeline — call or text 988 any time, day or night. A free, confidential line answered by trained crisis counselors. Relevant for kidney patients and caregivers experiencing severe depression, burnout, or mental health crisis. Includes dedicated support pathways for veterans (press 1), Spanish speakers, LGBTQI+ callers, and people who are Deaf or hard of hearing. Chat is also available at 988lifeline.org.
• ARCH National Respite Network — A national network that helps family caregivers of people with chronic illness, disability, or aging-related needs find temporary respite care — planned or emergency care that gives caregivers a break. The ARCH website's National Respite Locator helps caregivers find local respite providers by state, along with guidance on types of respite, how to pay for it, how to choose a provider, and fact sheets for family caregivers. Useful for caregivers of kidney patients at home.
• Family Caregiver Alliance — A national nonprofit supporting family caregivers of adults with chronic or serious illness. Offers a comprehensive library of caregiver resources covering health conditions, caring for another person, caring for yourself, grief and loss, financial matters, and in-home care options. Also provides a Services by State locator, caregiver support groups, the CareNav navigation tool (Bay Area), and research and advocacy. Helpful for spouses, adult children, and friends supporting a kidney patient at home.
• DOL Family and Medical Leave Act (FMLA) Guide — Official U.S. Department of Labor resource on the Family and Medical Leave Act (FMLA) — the federal law that entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons, including caring for a family member with a serious health condition such as kidney failure. The DOL page explains who qualifies, what is covered, employee rights, employer responsibilities, and how to file a complaint if rights are violated.
• Job Accommodation Network (JAN) — The leading free, expert, and confidential guidance service on workplace accommodations under the Americans with Disabilities Act (ADA). Kidney disease — including dialysis schedules, post-transplant recovery, and fatigue — can qualify as a disability under the ADA. JAN helps patients and caregivers understand their workplace accommodation rights, explore specific accommodation solutions for their condition, and navigate conversations with employers. Available by phone, chat, or the A-to-Z online database of conditions and accommodations.
• Medicaid Fair Hearings — Every Medicaid beneficiary has the right to request a fair hearing — a formal appeal — when Medicaid denies, reduces, or terminates a service or coverage decision they disagree with. This includes denials of dialysis, transplant services, medications, or home health. The federal Medicaid fair hearings page explains the process, timelines, and rights. Requesting a fair hearing can sometimes pause a coverage termination while the appeal is reviewed.
• CaringInfo (National Alliance for Care at Home) — A program of the National Alliance for Care at Home that provides free state-specific advance directive forms (living wills and healthcare power of attorney/POA) and plain-language guidance on end-of-life care planning. For kidney patients facing progressive disease or transplant decisions, having these documents in place ensures wishes are known and respected. CaringInfo also covers topics including palliative care, hospice, communicating with medical teams, grief and loss, and financial matters related to serious illness.
• SSA Compassionate Allowances – ESRD — The Social Security Administration's Compassionate Allowances program provides a fast-track process for people with the most severe disabilities — including end-stage renal disease (ESRD) requiring dialysis — to be approved for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) more quickly. Dialysis patients may qualify without the usual 5-month waiting period under certain conditions. The SSA Compassionate Allowances page lists all qualifying conditions and explains how to apply.
• Global Dialysis — The world's leading independent directory of dialysis centers for patients who travel or live abroad — covering more than 16,800 centers in 161 countries. Lets dialysis patients search for a center near their travel destination, read center reviews, find dialysis travel specialists and insurance, and access travel tips from other dialysis travelers. An essential resource for kidney patients on hemodialysis or peritoneal dialysis who want to travel or relocate internationally.
• Healthcare Hospitality Network (HHN) — Formerly the National Association of Hospital Hospitality Houses (NAHHH), now operating as the Healthcare Hospitality Network. HHN connects patients and families with hospitality houses — nonprofit or charitable lodging programs near hospitals and treatment centers that offer free or low-cost accommodations to patients traveling for medical care such as transplant evaluation, surgery, or prolonged dialysis treatment. The House Directory on hhnetwork.org helps patients find a lodging house near their medical center.
• Medicare Care Compare — The official Medicare tool for comparing the quality of dialysis facilities, nursing homes, hospitals, home health agencies, and other providers using inspection data, staffing levels, and quality measures. Dialysis patients can use it to compare facilities in their area before choosing a center, or to review their current center's inspection history and patient outcomes. To file a complaint about a dialysis facility directly with Medicare, visit medicare.gov and search for the Medicare complaint form or call 1-800-MEDICARE.
• Lyfebulb — A patient engagement platform whose stated mission is to reduce the burden of living with chronic disease through the power of the patient. Its disease areas include chronic kidney disease and transplantation. Lyfebulb runs patient webinar series, panel discussions, workshops, newsletters, and innovation challenges, and supports a network of patient ambassadors and patient entrepreneurs who turn lived experience into advocacy and new solutions.
• TransplantLyfe — An online peer community for transplant patients, care partners, and those considering transplant, brought to you by Lyfebulb. Offers discussion forums, a 'Find a Friend' feature for connecting with peers who share a similar transplant journey, and curated resources — a place to ask questions and learn from others who have lived through evaluation, surgery, and life after transplant.
• TRIO Oklahoma Chapter — Local chapter of Transplant Recipients International Organization (TRIO) serving transplant recipients, candidates, living donors, and donor families across Oklahoma. Connects the pre- and post-transplant community, provides peer support, and conducts organ and tissue awareness programs throughout Oklahoma.
• TRIO Northern Ohio Chapter — Local chapter of Transplant Recipients International Organization (TRIO) based in Cleveland, serving transplant recipients, candidates, living donors, and donor families across Northern Ohio. Provides peer support, education, and community resources for the transplant community in the greater Cleveland area.
• TRIO San Francisco Bay Area Chapter — Local chapter of Transplant Recipients International Organization (TRIO) serving transplant recipients, candidates, living donors, and donor families across the San Francisco Bay Area. Holds monthly support group meetings on the second Thursday of each month at 7:00 pm Pacific (Zoom). Promotes organ and tissue donation awareness and provides peer-to-peer support.
• TRIO Long Island Chapter — Local chapter of Transplant Recipients International Organization (TRIO) serving transplant recipients, candidates, living donors, and donor families on Long Island, New York. Provides local peer support, educational events, and community programming — including seasonal social events — for the Long Island transplant community.
• TRIO Philadelphia Chapter — Local chapter of Transplant Recipients International Organization (TRIO) serving the Delaware Valley transplant community, including Philadelphia and surrounding areas. Provides peer support, educational meetings, and community resources for transplant recipients, candidates, living donors, and donor families. The chapter created a free 36-page children's book telling the true story of a member's double lung transplant.
• TRIO Central Texas Chapter — Local chapter of Transplant Recipients International Organization (TRIO) based in Temple, TX, serving transplant recipients, candidates, living donors, and donor families across Central Texas. Affiliated with Amy's House — named in honor of donor Amy Henderson Firth — which supports the transplant community through education, advocacy, and donor awareness programs.
• Women's Transplant Support Group — Caroline Hill — A safe, confidential online support group hosted by Caroline Hill for women who are pre-transplant or post-transplant. Participants can share thoughts, feelings, experiences, and questions in a welcoming, judgment-free environment. The group meets every Monday at 7:30 p.m. Eastern Time on Zoom. Join using the meeting link or ID above; confirm the schedule with the host if details change.

Kidney Community Events & Programs

1 upcoming and recurring events for kidney patients, donors, and advocates. View all events and programs.

• NephCure Patient & Youth Summit (Annual Event) — An annual in-person event hosted by NephCure for individuals, families, caregivers, and advocates affected by rare, protein-spilling kidney diseases (RKD) such as nephrotic syndrome, FSGS, IgA nephropathy, C3G, and minimal change disease. The 2026 Summit runs June 25–27 at the Hyatt Regency New Orleans and offers expert talks, interactive workshops on nutrition and mental health, advocacy training, and community networking. A parallel Youth Summit gives young kidney warriors and their siblings (ages 8–18) a safe space to connect and learn. A Travel Assistance Program helps eligible patients cover travel and accommodation. Registration is required (fees apply); see the event page to register.