Directorio de Apoyo para Enfermedades Renales

Encuentre organizaciones de apoyo para enfermedades renales de confianza, recursos de trasplante, ayuda con diálisis, asistencia financiera y servicios de apoyo al paciente en EE. UU. Browse 210 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.
• 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) — Patient-led advocacy organization focused exclusively on the needs of dialysis patients. Educates policymakers and provides peer support resources.
• PKD Foundation — Dedicated to polycystic kidney disease (PKD) research, advocacy, and patient support. Offers local chapters, peer mentors, and educational programming.
• 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. Maintains local chapters and provides mentorship and community resources.
• National Transplant Assistance Fund (NTAF) — Helps transplant patients and living donors raise funds for transplant-related expenses. Offers fundraising programs, grants, and family support services.
• HealthWell Foundation — Independent nonprofit providing financial grants to underinsured patients, including those with end-stage renal disease (ESRD). Covers insurance premiums and cost-sharing obligations.
• 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 — Specializes in paired kidney exchange (kidney swap) programs, matching incompatible donor-recipient pairs with other pairs. Enables living donation when blood types or tissue types don't match.
• 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 — Canada's leading kidney health organization offering patient support, financial assistance programs, peer connections, transplant education, and advocacy for Canadians with kidney disease.
• Kidney Health Australia — Australia's national kidney health charity providing patient support, education, and advocacy programs for people living with kidney disease and their families.
• IGA Nephropathy Foundation of America — Patient advocacy and support organization specifically for IgA nephropathy (Berger's disease), one of the most common forms of primary kidney disease. Provides community and research support.
• Patient Services Inc. (PSI) — Provides health insurance premium assistance for patients with chronic and rare diseases, including those on dialysis or awaiting transplant. Helps cover Medicare and private insurance costs.
• Transplant Living (UNOS) — UNOS-operated patient education portal covering all aspects of the transplant process: getting on the waiting list, understanding organ offers, life after transplant, and living donation.
• MatchingDonors.com — Online platform (a 501(c)(3) nonprofit) connecting patients who need a kidney transplant with potential living donors. Patients can post their story and connect directly with interested donors. Important: patients must pay a one-time registration/membership fee (up to $595) to activate a profile and become visible to donors — donors are never charged. Hardship discounts or free memberships may be available by phone, and UK patients register for free. Many free donor-search resources exist, so it's worth trying those (and your own family and friend circle) first; this site charges patients for access.
• ESRD National Coordinating Center (ESRD NCC) — CMS-affiliated center that supports the ESRD Quality Incentive Program and helps dialysis providers improve care quality. Provides patient resources and data on dialysis facility performance.
• Global Kidney Foundation — International advocacy organization focused on raising awareness of kidney disease globally, supporting access to transplantation and dialysis in low- and middle-income countries.
• Kidneys for Communities — Uses a Community-Directed Donation™ model to tap into the power of communities to increase living kidney donors. Partners with organizations like the National Fallen Firefighters Foundation. One kidney chain can save 30+ lives.
• National Kidney Registry (NKR) — One of the largest living-donor kidney exchange networks in the U.S. Runs paired donation chains, voucher donation (donate now, loved one gets future priority), remote donation, and direct donation programs. Administers Donor Shield — a comprehensive living donor protection program covering lost wages, travel expenses, kidney prioritization, life insurance support, legal support, and complication protection.
• Kidney Konnect — Founded by kidney transplant recipient Jason Berry to provide kidney awareness, education, and resources specifically to Black and Brown communities in South Los Angeles. Addresses racial disparities in kidney disease and donation.
• 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 — International training center for organ donation professionals. Provides education, research, consulting, and the DonorPedia app. A division of Gift of Life Transplant Foundation, advancing donation outcomes worldwide.
• 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) — Organization dedicated to increasing kidney donation rates through public education and donor recruitment. Focuses on removing barriers to living kidney donation and connecting potential donors with recipients.
• Abundant (Documentary Film) — Documentary film exploring kidney disease, donation, and transplantation. Used as an awareness and education tool within the kidney community to inspire donors and inform patients about the transplant process.
• 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) — Advocacy organization promoting access to home dialysis (peritoneal and home hemodialysis) as a patient choice. Educates patients on home dialysis options and advocates for policy changes to expand access.
• KidneyBuzz — Online news and community platform providing kidney disease patients with the latest research, treatment updates, lifestyle tips, and community stories. A trusted 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 — Community-based foundation supporting kidney disease patients through peer advocacy, emotional support, and awareness campaigns. Empowers patients to take an active role in their health journey.
• Living Kidney Donors Network (LKDN) — Peer network connecting living kidney donors with one another for mutual support, post-donation resources, and advocacy. Helps living donors navigate life after kidney donation.
• Kidney Smart (DaVita) — Free chronic kidney disease (CKD) education classes provided by DaVita. Helps patients understand their diagnosis, explore treatment options including dialysis and transplant, and make informed decisions about their care.
• 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) — Global network of kidney cancer patient advocacy organizations. Raises awareness, promotes access to treatment, and supports patients with renal cell carcinoma (kidney cancer) through education and advocacy.
• 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 donors and recipients.
• No Greater Love Foundation — Foundation promoting living kidney donation through storytelling and community outreach. Highlights the selfless act of living donors and helps patients find potential donors through shared stories.
• CKD Peer Connect — Peer mentoring program connecting newly diagnosed chronic kidney disease (CKD) patients with experienced patients who have navigated similar journeys. Provides emotional support and practical guidance.
• 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-based nonprofit empowering living organ donors to give the gift of life without financial worry. Provides grants, education, awareness campaigns, and readiness support specifically for Texas living donors.
• LifeGift — Texas organ procurement organization (OPO) serving the Houston area. Manages deceased organ and tissue donation, supports donor families, and runs the Donate Life Texas initiative. Includes living donation resources.
• Southwest Transplant Alliance (STA) — Federally designated organ procurement organization (OPO) for the Dallas/Fort Worth area and surrounding Texas regions. Coordinates deceased organ and tissue donation between hospitals and transplant centers.
• Transplant Texas — Statewide Texas organ procurement and transplant coordination organization. Connects patients, donors, and transplant centers across Texas and supports the broader transplant community in the state.
• Donor Network West — OPO serving northern California and Nevada. Manages organ and tissue donation, provides living kidney donation education (including HIV+ donation), and supports donor families and recipients.
• Lifesharing — San Diego-based OPO serving southern California. Manages organ and tissue donation, honoring donor families and facilitating connections between donor families and transplant recipients.
• Gift of Hope — OPO for Illinois and NW Indiana. Provides organ and tissue donation services, bilingual resources (English/Spanish), donor family support, and community outreach programs.
• Versiti — Multi-state blood health and organ donation organization serving the Midwest. Provides organ procurement services, blood donation, and specialty healthcare programs across five states.
• Midwest Transplant Network — OPO serving Kansas and western Missouri. Coordinates organ and tissue donation, supports donor families, and provides community education about the importance of organ donation.
• Mid-America Transplant — OPO serving Missouri, southern Illinois, and Arkansas. Manages deceased organ donation coordination and provides donor family support services across the tri-state region.
• Iowa Donor Network — Iowa's OPO coordinating organ and tissue donation statewide. Hosts the Drive for Life: Emily's Legacy DMV outreach tour and provides educational programs, volunteer opportunities, and memorial events.
• Lifebanc — OPO serving northeast Ohio including the Cleveland region. Coordinates organ, eye, and tissue donation 24/7. Provides faith community outreach, multicultural resources, and donor family support.
• Lifeline of Ohio — Ohio OPO serving central and southeastern Ohio. Provides grief support, donor family resources, candlelight ceremonies, multicultural outreach, school programs, and neonatal and placenta donation services.
• Donate Life Indiana — Indiana's organ donation registry and awareness organization. Offers financial support programs, Donate Life license plates, volunteer programs, and participates in the Transplant Games of America.
• Donate Life Wisconsin — Wisconsin's organ donation registry and advocacy organization. Provides grants for living donors, DMV registration programs, Donate Life license plates, and educational resources for schools.
• Donate Life Northwest — OPO for Oregon and SW Washington. Runs the 'Erase The Wait' living kidney donation program, Done Vida bilingual outreach, and school education programs. Advocates for reducing organ transplant disparities.
• LifeCenter Northwest — OPO serving Alaska, Idaho, Montana, and Washington. Coordinates organ donation, connects donor families and recipients, and provides grief, bereavement, and aftercare services for donor families.
• New England Donor Services (NEDS) — OPO serving all six New England states. Manages organ and tissue donation, Henderson scholarship program for donor families, and provides bilingual resources in English and Spanish.
• NJ Sharing Network — New Jersey's OPO managing organ and tissue donation statewide. Offers donor family grief support, 5K community events, and public education about the life-saving impact of registration.
• Gift of Life Donor Program — Mid-Atlantic OPO based in Philadelphia, PA. Manages deceased organ and tissue donation, resources for transplant patients, Howie's House lodging for transplant families, and living donation support.
• Donate Life Florida — Florida's official organ and tissue donor registry organization. Manages statewide donor registration, provides bilingual (English/Spanish) resources, and runs public campaigns to increase donor enrollment.
• Donate Life South Carolina — South Carolina organization committed to increasing registered organ, eye, and tissue donors. Provides educational resources, faith-based outreach, and hosts community events including Pickleball for Hope.
• Carolina Donor Services — OPO serving North Carolina and parts of Virginia. Coordinates deceased organ and tissue donation between hospitals and transplant centers and provides community education on the importance of donation.
• Tennessee Donor Services — Tennessee's OPO coordinating organ and tissue donation across the state. Manages donor registration outreach, donor family support, and community education programs to increase donation rates.
• Kentucky Organ Donor Affiliates (KODA) — Kentucky's designated OPO coordinating organ and tissue donation statewide. Educates communities about donation and supports donor families and transplant recipients throughout Kentucky.
• Washington Regional Transplant Community (WRTC) — OPO serving the greater Washington DC metro area including northern Virginia and suburban Maryland. Coordinates organ and tissue donation and promotes donation awareness in the mid-Atlantic region.
• LifeNet Health — Virginia-based OPO and tissue bank with international reach. Provides organ procurement, tissue donation services, an Institute for Regenerative Medicine, and international biologics programs.
• National Foundation for Transplants — Helps transplant patients — including kidney recipients — raise funds for medical expenses through community fundraising campaigns. One of the original transplant financial assistance organizations in the U.S.
• Transplant Games of America — Biennial Olympic-style athletic competition for organ transplant recipients, living donors, and donor family members. Promotes awareness of transplantation, celebrates recovery, and builds a national transplant community.
• LifeSource — OPO serving the upper Midwest across five states. Coordinates organ and tissue donation, donor family support, and public education programs to increase donation registration rates.
• Nevada Donor Network — Nevada's designated OPO coordinating organ and tissue donation statewide. Promotes donor registration, supports donor families, and works with transplant centers to facilitate life-saving organ procurement.
• New York Organ Donor Network (LiveOnNY) — New York City's OPO (operating as LiveOnNY). One of the largest OPOs in the country. Manages deceased donation for New York City and Westchester, Nassau, and Suffolk counties.
• Arkansas Regional Organ Recovery Agency (ARORA) — Arkansas's designated OPO coordinating organ and tissue donation statewide. Partners with hospitals to facilitate donation and supports donor families and transplant recipients throughout the state.
• Kidney Solutions — Nonprofit community led by transplant recipients, living donors, caregivers, and advocates. Provides free mentoring, weekly Zoom support groups (Mondays 6 pm CT), and practical education for kidney transplant and living donation navigation. Hosts the 'Kent's Kidney Stories' podcast led by VP Kent Bressler, RN and transplant recipient.
• Donor Shield — Comprehensive living donor protection program administered through the National Kidney Registry. Covers lost wage reimbursement, donor expense reimbursement, kidney prioritization (donors get transplant priority if they ever need one), pet care reimbursement, life insurance support, legal support, complication protection, home blood draws, and donor mentoring.
• Kidney Cancer Association (KCA) — Leading advocacy and support organization for kidney cancer (renal cell carcinoma) patients and caregivers. Provides newly diagnosed guides, treatment center and clinical trial finders, caregiver essentials, patient stories, community connection, and an education podcast.
• 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 — Comprehensive education and comparison resource for home dialysis (peritoneal and home hemodialysis). Provides a UFR calculator, Medicare cost calculator, machine comparisons, clinic finder, patient stories, expert Q&A, and e-classes to help patients choose and manage home treatment.
• TransplantNews — Online news platform covering stories that matter to the transplant community — including kidney, liver, heart, lung, and pancreas transplants. Reports on global policy, donation laws, clinical advances, and patient advocacy news.
• 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) — Nonprofit supporting families and individuals born with Congenital Anomalies of the Kidney and Urinary Tract (CAKUT) — the leading cause of kidney failure in children. Unites care, community, and research for families, adults, and anyone born with kidney or urinary tract differences, from birth through lifetime care. (Recently renamed from CAKUT Foundation to KidneyFuture.)
• 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 — Patient advocacy organization dedicated to finding a cure for IgA nephropathy (Berger's disease) — the most common form of glomerulonephritis worldwide. Provides nephrologist finder, global patient network, treatment guidelines, lab result guides, biopsy interpretation, IgA Nephropathy Day, and the annual SPARK conference.
• NAPRTCS (North American Pediatric Renal Trials) — The definitive research registry and clinical resource for serious kidney disease in children, with data from over 20,000 pediatric patients with kidney transplants, on dialysis, or with CKD from more than 100 participating institutions. Families can use NAPRTCS to find a specialist center treating children with kidney disease.
• 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 currently covers transplant centers in IPRO's ESRD Networks (New England, New York, South Atlantic, and Ohio River Valley); 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 — The largest OPO in North Carolina, coordinating deceased organ, eye, and tissue donation. Partners with 100+ hospitals and 200 transplant centers, and provides donor family support and community education.
• Donor Network of Arizona (DNA) — Arizona's federally designated OPO, coordinating organ, eye, and tissue donation statewide. Offers donor registration, multicultural outreach, and public education programs.
• DonorConnect — OPO covering 3.9M residents and 90+ hospitals across the Intermountain West. Partners with Primary Children's Hospital, Intermountain Medical Center, and University of Utah Hospital transplant centers.
• Indiana Donor Network — Indiana's federally designated OPO, coordinating organ, tissue, and eye donation. Offers donor family scholarships and is an active participant in the Transplant Games of America.
• CORE — Center for Organ Recovery & Education — OPO partnering with 150+ hospitals to coordinate organ, tissue, and cornea recovery and computerized organ matching. Provides donor family support services.
• OneLegacy — One of the largest OPOs in the U.S., serving the largest transplant candidate population in the country. Provides multilingual and multicultural outreach and donor family support.
• Donor Alliance — The third-largest donation service area in the U.S., serving 6.3M residents and 100+ hospitals. Offers financial assistance resources for living donors, donor registration, and community education.
• Louisiana Organ Procurement Agency (LOPA) — Louisiana's federally designated OPO, serving a state with one of the highest ESRD rates in the U.S. Provides faith-based and multicultural outreach and donor family support.
• Alabama Organ Center (UAB Medicine) — Alabama's federally designated OPO, based at UAB Medicine. Coordinates deceased organ and tissue donation statewide and provides donor family support and community education.
• LifeQuest Organ Recovery Services — Florida's OPO for the north-central region, serving an area with high CKD burden. Coordinates deceased organ and tissue donation, community education, and donor registration.
• OurLegacy — Federally designated OPO for the Orlando region. Coordinates organ and tissue donation with multicultural and bilingual outreach, and runs donor family support programs.
• Finger Lakes Donor Recovery Network — Federally designated OPO serving Western and Central New York outside NYC, coordinating deceased organ and tissue donation for the Rochester and Finger Lakes regions.
• Upstate New York Transplant Services (UNYTS) — OPO serving the Buffalo metro and surrounding Western NY counties. Provides organ and tissue donation, donor family support, and public awareness. Distinct from LiveOnNY, which covers NYC.
• Pacific Northwest Transplant Bank (PNTB) — One of the original U.S. OPOs, coordinating organ and tissue procurement for Pacific Northwest transplant centers. Works alongside Donate Life Northwest in the region.
• Mississippi Organ Recovery Agency (MORA) — Mississippi's federally designated OPO, serving a state with among the highest ESRD rates in the nation. Coordinates deceased organ and tissue donation statewide with donor family support and community education.
• Renal Physicians Association (RPA) — The professional association representing 3,500+ nephrologists, NPs, and PAs, advocating for kidney patients on Capitol Hill and at CMS. Develops clinical practice guidelines, reimbursement policy, and quality standards, and is a longstanding co-advocate with AAKP on Capitol Hill Day.
• American Nephrology Nurses Association (ANNA) — An association of 10,000+ nephrology nurses advocating for kidney patients across dialysis, transplant, CKD, and acute care settings. Lobbies Congress and CMS on ESRD policy, publishes clinical practice standards, and is a member of the Kidney Care Partners coalition.
• 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 — ANCA vasculitis (GPA, MPA) is a leading cause of rapidly progressive kidney failure. The foundation provides a specialist/center finder, disease education, clinical trial listings, an annual patient conference, research funding, and a peer support network for kidney patients with vasculitis.
• Lupus Foundation of America (LFA) — Lupus nephritis affects up to 60% of lupus patients and is a top cause of kidney failure in women of color. LFA provides a Lupus Nephritis Information Center, a monthly National Kidney Care virtual support group, treatment-guideline webinars, peer connection, and research advocacy at the FDA and Congress.
• Association of Organ Procurement Organizations (AOPO) — The national membership organization representing all 57 U.S. OPOs. Advocates for policies improving deceased donation rates, OPO accountability, and equitable organ allocation, and sets OPO best practices and performance standards.
• Coalition for Kidney Health — A broad coalition co-led by NKF that brings patient groups, professional societies, and advocacy orgs to Capitol Hill for unified kidney health policy days. Hosts World Kidney Day congressional events and advances shared priorities: ESRD funding, living donor protections, and CKD early detection.
• Fabry Support & Information Group (FSIG) — Fabry disease is a genetic lysosomal storage disorder causing progressive kidney failure, often requiring dialysis and transplant. FSIG provides patient education, specialist referrals, peer support, financial assistance navigation, and research updates specifically for Fabry patients.
• National Kidney Foundation of Illinois (NKFI) — An independent NKF chapter providing Illinois kidney patients with direct patient services: transplant education, peer mentoring, kidney health screenings, and patient navigation. Operates independently of NKF national with a local program focus.
• The Kidney Collective — A grassroots coalition focused specifically on APOL1-mediated kidney disease (AMKD) and broader kidney health equity for Black Americans. Partners with Kidney Care Partners and conducts community outreach, policy advocacy, and patient education targeting populations with the highest kidney disease burden. Distinct from the APOL1 Action Alliance.
• American Society of Transplant Surgeons (ASTS) — An association of 2,000+ transplant surgeons advocating for kidney transplant access, organ allocation equity, living donor protections, and OPTN reform. Issues position statements on organ discard reduction and equitable waitlist access, and runs a Patient Voice Initiative.
• 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) — A federally supported registry that publishes data and outcome reports for every transplant center and organ procurement organization in the United States. Its patient-friendly tools let candidates and families compare transplant programs by volume, waiting time, and outcomes when choosing where to seek care.
• 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 — Provides online support groups and resources that help transplant patients, living donors, and caregivers build emotional resiliency and strength throughout the transplant experience.
• 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. It runs eight patient programs, including community and emotional support sessions, a peer team program for kids and young adults, a healthy eating program with recipes and cooking demos, a patient grant program (awards of $500–$2,000 to ease the financial burden on families), Camp NSF (an annual family camp), Backpacks of Hope, the Little Angels program for the youngest patients, and a podcast. 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 — An End-Stage Renal Disease (ESRD) Network Program operating under contract with the Centers for Medicare & Medicaid Services (CMS), supporting more than 132,000 dialysis and kidney-failure patients across 13 states through four regional Networks (New England, New York, South Atlantic, and Ohio River Valley). 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 and veteran living with end-stage renal disease (ESRD), offering grassroots advocacy, education, resources, and peer mentorship to help kidney patients, care partners, and veterans navigate their journey. 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.

Eventos y Programas de la Comunidad Renal

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.