PKD Foundation

What PKD Foundation does

The PKD Foundation is a 501(c)(3) public charity (Federal Tax ID 43-1266906) founded August 20, 1982 by Jared J. Grantham, M.D. and Joseph H. Bruening, headquartered in Kansas City, Missouri. It is the only U.S. nonprofit solely dedicated to polycystic kidney disease (PKD), serving the estimated 500,000+ Americans and 12.4 million people worldwide affected by autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD). Its constituencies span five segments — PKD patients, caregivers and family members, parents of children with PKD, clinicians/researchers, and donors/philanthropists — addressed through a hybrid personabased segmentation approach.

The foundation's product set is research-infrastructure and patient-support rather than commercial: the ADPKD Registry (the nation's largest patient-powered, patient-centered registry, launched 2019, EHR-enhanced in 2023), the PKD Outcomes Consortium (PKDOC) — co-convened with the Critical Path Institute to qualify total kidney volume as a regulatory biomarker with FDA and EMA, the PKD Centers of Excellence network (launched 2022, expanded to Pediatric Centers in 2024), the ADPKD and ARPKD Patient Handbooks, PKD Life Magazine, PKD Chronicles Podcast, ACT Alerts clinical trial notification system, Hope Line, PKD Connect Peer Mentors, the Walk for PKD event program, and the biennial PKDCON conference. It also runs the largest private PKD research grant program in the U.S., awarding research grants ($120,000/year for two years) and fellowships ($70,000/year for two years) and co-created the Jared J. Grantham Research Fellowship with the ASN.

The revenue model is pure philanthropy: charitable donations (one-time, recurring, tributes/memorials, donor-advised funds, vehicle donations, matching gifts, wills and planned giving, stock and IRA rollovers) and fundraising event income (Walk for PKD has raised over $35M in 24 years). The foundation has allocated approximately $30M in direct research project funding while leveraging over $1B in federal research funding from NIH and DoD since 1982. There is no product pricing — all patient programs (handbooks, registry enrollment, peer mentoring, Hope Line, chapters, trial alerts, webinars) are provided free of charge. Go-to-market is community-led across 50+ local PKD communities, the Walk for PKD footprint, PKDCON, digital outreach (PKD News newsletter, social channels, podcasts), and the Centers of Excellence clinical network.

Name

PKD Foundation

Legal name

PKD Foundation

Website

https://pkdcure.org

Company type

Private

Founded year

1982

Operating status

Operating

Headcount range

11–50 employees

Short description

The PKD Foundation is the only U.S. 501(c)(3) nonprofit solely dedicated to polycystic kidney disease (PKD), funding research, running the ADPKD Registry and PKD Outcomes Consortium, operating PKD Centers of Excellence, and delivering free patient-education and support programs to the 500,000+ Americans and 12.4M people worldwide affected by ADPKD and ARPKD.

Ownership category

akta.pro rank

Product category

Disease-focused nonprofit health advocacy

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Scientific Research and Development Services (5417)

SIC

Services-Social Services (8300)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

Private Foundations (BPAGAKAA), Research & Science Grantmaking Foundations (BPAGAKAI), Public Health Program Grants Management & Administration (HLAJALAC)

Keywords

• Kidney disease research
• Patient advocacy nonprofit
• Clinical trial registry
• Specialty care network
• Medical research funding

Headquarters

HQ city

Kansas City

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Technology or R&D, Marketing or Sales, Operations, Others

Revenue model

1. Charitable Donations: The PKD Foundation's primary revenue is derived from charitable donations including one-time gifts, recurring/monthly gifts, tributes and memorials, donor-advised funds, vehicle donations, matching gifts, and legacy/planned giving (wills, trusts, IRA charitable rollovers). The foundation operates as a 501(c)(3) public charity (Federal Tax ID: 43-1266906) and is the largest private funder of PKD research in the U.S.
2. Fundraising Events: Revenue generated through the Walk for PKD (over $35M raised in 24 years), Fundraise Your Way peer-to-peer events, and other community fundraising activities. The foundation also receives corporate sponsorships and matching gift contributions from employers.

Go-to-market motion1 record

Distribution channels7 records

Marketing channels15 records

Core offering

The PKD Foundation is the only U.S. nonprofit solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). It funds PKD research through grants and fellowships, operates the ADPKD Registry and the PKD Outcomes Consortium with the FDA/EMA, designates PKD Centers of Excellence clinics, and delivers free patient education, peer mentoring, and community programs (Walk for PKD, PKDCON, Hope Line). Revenue is generated through charitable donations, fundraising events, and legacy giving rather than product or service sales.

Product overview

The PKD Foundation is the only U.S. organization solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). The Foundation offers a comprehensive suite of programs and services including the ADPKD Registry (patient-powered research database), PKD Life Magazine (patient publication), ADPKD and ARPKD Patient Handbooks, PKD Centers of Excellence (specialized clinic network), PKD Connect (community platform with peer mentors), Walk for PKD (national fundraising events), ACT Alerts (clinical trial notifications), Research Grants and Fellowships Programs (funding for scientists), PKD Outcomes Consortium (regulatory pathway collaboration), PKDCON (annual conference), PKD Chronicles Podcast, Treatment Pipeline resource, and Hope Line (support hotline). These offerings form an integrated ecosystem supporting PKD patients, researchers, and clinicians from education and community support through clinical trial participation to research funding.

Differentiator

Problem solved

Functional benefit

Brands

• PKDCON: Annual PKD Connect Conference - premier two-day conference for education, inspiration, and community.
• Walk for PKD
• PKD Connect

Products and services

• ADPKD Registry Patient-powered, patient-centered registry where ADPKD participants contribute health data to create an essential resource enabling researchers to develop better outcomes that reflect patient perspectives.
• PKD Centers of Excellence Elite designation network of nephrology practices and clinics providing patient-focused, comprehensive, multidisciplinary ADPKD care with patient navigator services and integration of research into clinic.
• PKD Outcomes Consortium (PKDOC) Collaboration with the Critical Path Institute, pharmaceutical industry representatives, PKD clinicians, and FDA to facilitate clinical trial development for PKD therapies by establishing a clear regulatory pathway.
• Walk for PKD Largest polycystic kidney disease fundraising and awareness event in the U.S., held annually across multiple cities, uniting the community and raising funds for lifesaving research; over $35 million raised in 24 years.
• Hope Line

Quantifiable outcome

• Over $1 billion in federal research funding (NIH, DoD) leveraged since 1982
• +6 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

14 partnerships are on record, tiered core and minor.

• American Society of Nephrologists (ASN)coreStrategic or Co-development Partner · 1 January 2015The foundation established the Jared J. Grantham Research Fellowship in partnership with the ASN, committing $500,000 which was matched by $1.5 million from ASN to support PKD-related research in perpetuity. The foundation also co-sponsored a 2001 strategic planning meeting with NIH on PKD.
• National Institutes of Health (NIH)coreStrategic or Co-development PartnerThe NIH is the largest federal funder of PKD research. The foundation has leveraged over $1 billion in NIH research funding and collaborates on initiatives such as the NIH PKD Centers of Excellence (established 1998), CRISP longitudinal study, and ADPKD Biomarker Summit. The NIH National Institute of Diabetes and Digestive Kidney Disease (NIDDK) is a key research partner.
• U.S. Department of Defense (DoD)coreStrategic or Co-development PartnerThe foundation leverages DoD funding for PKD research grants. Several foundation-funded researchers have subsequently received DoD grants (e.g., Dr. Kenneth Hallows received DoD funding for the TAME-PKD clinical trial and is PI for the BEAT-PKD trial).
• U.S. Food and Drug Administration (FDA)coreStrategic or Co-development PartnerThrough the PKD Outcomes Consortium (PKDOC), the foundation collaborates with the FDA to establish regulatory pathways for PKD therapies. Joint work led to FDA and EMA qualification of total kidney volume (TKV) as a prognostic enrichment biomarker for clinical trial design. The foundation also hosted a 2007 FDA-PKD Foundation workshop on clinical trial endpoints.
• Critical Path Institute (C-Path)coreStrategic or Co-development PartnerThe foundation co-convenes the PKD Outcomes Consortium (PKDOC) with the Critical Path Institute, bringing together pharmaceutical companies, PKD clinicians, and FDA regulators to accelerate clinical development of PKD therapies through regulatory science.
• European Medicines Agency (EMA)coreStrategic or Co-development PartnerThe PKDOC submitted a final qualification package for total kidney volume (TKV) to both the FDA and EMA in 2014. EMA subsequently approved TKV as a prognostic enrichment biomarker, enabling use in European clinical trials for PKD therapies.
• Mayo Clinic Translational PKD CentercoreTechnology or IntegrationMayo Clinic hosts one of the premier PKD research and clinical care centers. Dr. Neera Dahl serves as Director of the PKD Center of Excellence at Mayo Clinic Rochester. Mayo Clinic is a key site for ADPKD Registry research and clinical trials.
• Otsuka PharmaceuticalscoreStrategic or Co-development PartnerOtsuka developed tolvaptan (the first FDA-approved treatment for ADPKD, approved 2018), with the foundation having supported early studies leading to tolvaptan's development and helped guide PKD patients to clinical trials. The foundation's research investment contributed to the scientific foundation for the drug.
• Calico Life SciencesminorStrategic or Co-development PartnerCalico is sponsoring the ANCHOR ADPKD Phase 2 clinical study evaluating an investigational medication in adults with ADPKD. The PKD Foundation shares this information for awareness purposes only; it does not endorse specific companies or trials.
• KDIGO (Kidney Disease: Improving Global Outcomes)coreStrategic or Co-development PartnerThe foundation partnered with KDIGO to produce the 'Understanding KDIGO 2025 ADPKD Clinical Guideline: A Plain Language Guide' to help patients understand the latest medical recommendations. Dr. Neera Dahl co-chairs the KDOQI ADPKD Workgroup on KDIGO Guidelines for ADPKD.
• Children's Hospital of Philadelphia (CHOP)coreStrategic or Co-development PartnerThe ARPKD Database/Registry is managed by CHOP and initiated by Dr. Lisa Guay-Woodford. CHOP serves as a key research site for ARPKD and hepato/renal fibrocystic diseases, collecting medical records data and optional tissue/blood samples for research.
• PKD Research Resource Consortium (PKD-RRC)coreTechnology or IntegrationThe PKD-RRC provides pilot and feasibility grants for PKD research and maintains standardized PKD mouse models for the research community. The foundation's funded researchers contribute to and benefit from this consortium infrastructure.
• C-Path Translational Research Therapeutics Accelerator (TRxA)coreTechnology or IntegrationThe foundation is a partner in the C-Path TRxA, which provides funding opportunities and translational research support to accelerate PKD therapies from preclinical to clinical stage.
• PKD Cures Act Coalition (Congressional)coreOthersThe PKD Foundation drove the introduction of the first-ever PKD-specific federal legislation (the PKD Cures Act) in Congress in 2025/2026, aiming to advance the path toward new treatments and a cure for more than 500,000 Americans with PKD. This is a legislative advocacy coalition.

Scale indicators8 records

Recent moves8 records

Expansion highlights5 records

Direct peers

• National Kidney Foundation: The largest U.S. kidney-focused nonprofit, funding research, patient education, and advocacy for CKD, glomerular diseases, and kidney-related conditions. Directly comparable in mission scope, GTM (peer communities, walks, education), and revenue model (donations + events).
• Cystic Fibrosis Foundation: A rare-disease-focused nonprofit that funds basic/clinical research, runs patient registries, and operates a venture philanthropy model that helped drive multiple FDA-approved CF therapies. Highly comparable disease-advocacy and research-investment model.
• NephCure Kidney International: A U.S. nonprofit dedicated to rare glomerular diseases (FSGS, nephrotic syndrome). Operates patient registries, research grants, and education programs — structurally analogous to PKD Foundation despite a different kidney sub-specialty.
• Alport Syndrome Foundation: A rare genetic kidney disease nonprofit funding research, maintaining a patient registry, and running a peer-mentor community. Closely comparable in disease-specificity, patient-data assets, and small-staff operating model.
• American Kidney Fund: A kidney-focused public charity providing direct financial assistance, education, and advocacy for kidney patients. Comparable in fundraising footprint (direct donations, events) and patient-support mission.

Broad incumbents

• National Organization for Rare Disorders (NORD): A broad umbrella nonprofit serving as an umbrella resource for ~7,000 rare diseases including PKD. Operates research grants, advocacy, and patient registries at an ecosystem level rather than competing directly on PKD-specific programs.
• American Diabetes Association: A large U.S. chronic disease nonprofit funding diabetes research and providing patient education/advocacy. Comparable in donations/event GTM and research-grant programs, though much larger in scope and budget.

Others

• American Liver Foundation: Funds research and patient support for liver disease including polycystic liver disease (PLD), a common comorbidity of ADPKD. Comparable in single-organ-disease focus, research-funding model, and patient-education mission.

Regional players

• PKD Charity (UK): The UK-based international equivalent focused on PKD research, patient support, and advocacy for British patients. Operates a similar patient registry and community-led GTM but is geographically separate from PKD Foundation's U.S. footprint.

Emerging players

• LUNGevity Foundation: A single-disease health nonprofit funding lung cancer research and patient support. Useful comparable for disease-specific operating model, research grant administration, and digital community programs.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/pkdfoundation
• YouTubeyoutube.com/pkdcure
• Facebookfacebook.com/pkdfoundation
• LinkedInlinkedin.com/company/pkd-foundation
• Instagraminstagram.com/pkdcure

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about PKD Foundation