Undiagnosed Diseases Network Foundation

What Undiagnosed Diseases Network Foundation does

The Undiagnosed Diseases Network Foundation (UDNF) is a 501(c)(3) patient-led nonprofit founded in 2023 and headquartered in Washington, D.C. UDNF supports individuals living with undiagnosed and ultra-rare diseases and their families through direct services, advocacy, and research partnerships. Its core offering is the Patient Navigation Program, a CZI-funded one-on-one case management service that guides patients through the diagnostic and therapeutic odyssey, connecting them to specialists, social services, research programs, and peer support. The foundation also operates the UDN PEER (Patient Engagement and Advocacy Resource) community, a Therapeutic Matching and Discovery Initiative, a Patient-Centered Research Initiative, and recurring educational programming (Tell Me More Lecture Series, Together on Tuesdays).

UDNF's underlying technology and research capability sits primarily within its research partner, the NIH-funded Undiagnosed Diseases Network (UDN), a national network of 12 clinical sites (Baylor, Stanford, Vanderbilt, Miami, Utah, Duke, UCLA, Harvard, UAB, Washington University in St. Louis, and others). The UDN applies a two-tiered genomic analysis approach combining CLIA-certified whole exome and whole genome sequencing with research-level Table 5 reports, metabolomics and lipidomics profiling at the Mayo Clinic Metabolomics Core, model organism studies, and AI-powered variant interpretation tools including MARRVEL, Emedgene, and Omicia Opal. This infrastructure has contributed to the identification of over 50 novel diseases within the broader rare disease landscape.

UDNF is funded through individual donations (monthly giving on Givebutter, planned giving, stock and securities gifts), foundation grants (notably a $2.5 million Chan Zuckerberg Initiative grant in 2024), and policy advocacy that supports Congressional appropriations to the UDN ($18M secured in 2023). All patient services are provided free of charge; revenue mechanics are donation- and grant-driven rather than transactional. The organization goes to market through a community-led motion: digital channels (E-News, social media, website with Spanish-language support), events (Undiagnosed Day, Global Genes RARE Advocacy Summit), and direct navigation outreach via clinical sites and partner advocacy organizations.

Name

Undiagnosed Diseases Network Foundation

Legal name

Undiagnosed Diseases Network Foundation

Website

https://www.udnf.org

Company type

Private

Founded year

2023

Operating status

Operating

Headcount range

1–10 employees

Short description

UDNF is a patient-led 501(c)(3) nonprofit that provides navigation, advocacy, and research partnerships for individuals with undiagnosed and ultra-rare diseases, operating a Patient Navigation Program in collaboration with a 12-site national clinical research network.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease advocacy
• Patient navigation services
• Undiagnosed disease support
• Patient-led nonprofit
• Ultra-rare disease research

Headquarters

HQ city

Washington

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Individual Donations: Monthly giving program where donors contribute regularly to support UDNF's mission. The foundation also accepts one-time donations, stocks and securities, and planned giving options.
2. Foundation Grants: Major grant funding including $2.5 million from Chan Zuckerberg Initiative (CZI) to launch Patient Navigation Program. UDNF also receives support from various healthcare and research foundations.
3. Congressional Funding: UDN received $18M from Congress in 2023 to fund the Undiagnosed Diseases Network research and operations.
4. Planned Giving: Bequest gifts through wills/trusts, IRA charitable rollovers, endowment gifts, and beneficiary designation gifts from retirement accounts.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels6 records

Core offering

The Undiagnosed Diseases Network Foundation (UDNF) is a patient-led nonprofit that supports individuals with undiagnosed and ultra-rare diseases through a Patient Navigation Program providing one-on-one case management, a peer-to-peer engagement community (UDN PEER), and research and diagnostic programs in collaboration with the Undiagnosed Diseases Network (UDN). Its services connect patients and families to clinical specialists, social services, research programs, and community support, while also advocating for policy changes and sustained research funding. All services are provided free of charge to patients and funded through donations, grants, and congressional appropriations.

Product overview

The Undiagnosed Diseases Network Foundation (UDNF) operates a platform of patient-centered programs and services for individuals with undiagnosed and ultra-rare diseases. The core offering consists of the Patient Navigation Program — a one-on-one case management service providing personalized guidance through the diagnostic journey — supplemented by the UDN PEER (Patient Engagement and Advocacy Resource) for peer-to-peer community support. The UDNF also runs three research and diagnostic programs: the Undiagnosed & Ultra-rare Diseases Diagnostic Program (in collaboration with the Undiagnosed Diseases Network), the Therapeutic Matching and Discovery Initiative, and the Patient-Centered Research Initiative. Educational offerings include the Tell Me More Lecture Series and Together on Tuesdays webinar series, which address topics such as genetic testing, IEP/504 plans, and palliative care. Together, these programs provide a comprehensive ecosystem supporting diagnosis, research, treatment access, and community connection for the undiagnosed population.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Navigation Program A one-on-one case management service connecting undiagnosed and ultra-rare disease patients and their families to services, care experts, social services, research programs, diagnostic resources, and community support to help them navigate the healthcare system.
• Undiagnosed & Ultra-rare Diseases Diagnostic Program A collaborative program with the Undiagnosed Diseases Network (UDN) that advances patient-centered research and clinical care, enabling undiagnosed patients and families to get answers through accessible, equitable, accurate, and efficient diagnosis.
• Therapeutic Matching and Discovery Initiative A program that connects ultra-rare disease patients to potential therapeutic discoveries and treatments by collaborating with the UDN to advance patient-centered research.
• Patient-Centered Research Initiative A research initiative that enables undiagnosed and ultra-rare disease patients and families to participate in research that can lead to a diagnosis and treatment for their specific condition.

Quantifiable outcome

• Over 50 novel diseases identified through UDN research network
• +3 more outcomes

Named customers5 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Nine partnerships are on record, tiered minor and core.

• EveryLife Foundation for Rare DiseasesminorStrategic or Co-development Partner · 1 January 2025UDNF partnered with EveryLife Foundation for Rare Diseases during advocacy efforts on Capitol Hill to ensure ultra-rare and undiagnosed patients are not left behind in policy discussions.
• Wilhelm FoundationcoreStrategic or Co-development Partner · 1 January 2024Wilhelm Foundation co-hosted Undiagnosed Day 2024 with UDNF and UDNI at Harvard Medical School. The event brought together global experts to highlight work being done to improve the diagnostic odyssey.
• Undiagnosed Diseases Network International (UDNI)coreStrategic or Co-development Partner · 1 January 2024UDNI co-hosted Undiagnosed Day 2024 with UDNF and Wilhelm Foundation at Harvard Medical School, featuring presentations from global experts.
• UDN PEER (Patient Engagement and Advocacy Resource)coreStrategic or Co-development Partner · 1 January 2023UDN PEER integrated with UDNF in October 2023. UDN PEER co-chairs now serve on UDNF Board of Directors. UDNF provides administrative support to PEER while working on priority objectives from UDNF's strategic plan.
• Global GenesminorStrategic or Co-development PartnerUDNF participated in the Global Genes RARE Advocacy Summit (formerly Patient Advocacy Summit), hosting a track on 'Empowering the Rare Individual' with a session titled 'Managing Life Without a Diagnosis'.
• Vanderbilt University Medical CentercoreStrategic or Co-development PartnerVanderbilt operates a UDN clinical site and launched the Vanderbilt Undiagnosed Diseases Program (VUDP) in April 2021. VUMC was named a NORD Center of Excellence in 2021.
• Baylor College of Medicine / Baylor GeneticscoreTechnology or IntegrationBaylor College of Medicine operates a UDN clinical site and Baylor Genetics provides CLIA-certified whole genome sequencing and laboratory services for the network.
• NORD (National Organization for Rare Disorders)minorStrategic or Co-development PartnerUDNF participates in NORD initiatives including the Living Rare Living Stronger planning committee. Vanderbilt UDN site was named a NORD Center of Excellence.
• UDN Clinical Sites NetworkcoreStrategic or Co-development PartnerNetwork of 12 clinical sites including Baylor, Stanford, Vanderbilt, Miami, Utah, Duke, UCLA, Harvard, University of Alabama at Birmingham (UAB), Washington University in St. Louis, and others providing diagnostic services nationwide.

Scale indicators6 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• National Organization for Rare Disorders (NORD): NORD is the leading U.S. rare disease patient advocacy organization and a partner of UDNF (Vanderbilt's UDN site is a NORD Center of Excellence). Both organizations advocate for rare disease patients, drive policy, and provide patient resources.
• Global Genes: Global Genes is a rare disease advocacy organization that hosts the RARE Advocacy Summit where UDNF participates. Both organizations focus on empowering rare disease patients through community, education, and advocacy.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation is a rare disease policy advocacy organization that partners with UDNF on Capitol Hill advocacy. Both organizations pursue policy change to benefit rare and undiagnosed disease patients.
• Wilhelm Foundation: Wilhelm Foundation co-hosts Undiagnosed Day with UDNF and UDNI. Both organizations focus specifically on undiagnosed disease patients and work to end the diagnostic odyssey.
• Undiagnosed Diseases Network International (UDNI): UDNI is the international counterpart of the U.S. Undiagnosed Diseases Network and co-hosts Undiagnosed Day with UDNF. Both organizations facilitate cross-border collaboration on undiagnosed disease diagnosis and research.
• Rare Genomics Institute: Rare Genomics Institute helps rare disease patients access genomic sequencing and research participation. Like UDNF, it addresses the diagnostic odyssey for patients with rare and undiagnosed conditions through research access and community support.

Broad incumbents

• Genetic Alliance: Genetic Alliance is a broader nonprofit focused on transforming health through genetics, serving as an umbrella for many disease-specific communities. It is comparable to UDNF as a patient-led advocacy organization engaging with genetic and rare disease communities.
• Chan Zuckerberg Initiative Rare As One Network: CZI's Rare As One Network funds patient-led rare disease organizations. UDNF is a CZI grantee ($2.5M) and operates with similar patient-led governance, making this a comparable funder/peer ecosystem.
• NIH Undiagnosed Diseases Program: The NIH Undiagnosed Diseases Program was the precursor to the Undiagnosed Diseases Network (UDN), which UDNF partners with. Both programs pursue diagnosis and research for patients with mysterious, unsolved conditions.

Regional players

• EURORDIS – Rare Diseases Europe: EURORDIS is the European counterpart to NORD, representing rare disease patient organizations across Europe. While UDNF is U.S.-focused, both serve the undiagnosed/rare disease patient advocacy mission at a regional level.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/underfootfloors
• LinkedInlinkedin.com/company/udnforg

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Undiagnosed Diseases Network Foundation