Skip to the page content
Your donations
Passes our checks

Undiagnosed Diseases Network Foundation

EIN 87-3474254 · Washington, DC

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthFair57 out of 100GovernanceNot ratedThe short tax form does not cover thisImpact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE UDNF'S MISSION IS TO IMPROVE ACCESS TO DIAGNOSIS, RESEARCH, AND CARE FOR ALL WITH UNDIAGNOSED AND ULTRA-RARE CONDITIONS. WE AIM TO FOSTER COLLABORATION BETWEEN PATIENTS, CLINICIANS, AND SCIENTISTS TO ENHANCE THE QUALITY OF LIFE OF UNDIAGNOSED PATIENTS. WE DO THIS BY MITIGATING BARRIERS TO EQUITY AND ACCESS IN HEALTHCARE; SETTING STANDARDS FOR PATIENT MANAGEMENT; AND BRIDGING DIAGNOSIS AND THERAPEUTICS AS WELL AS RESEARCH AND CLINICAL CARE IN UNDIAGNOSED AND ULTRA-RARE DISEASES.

Income
$120,373
Spending
$1.1 million
Reserves
4.2 months of spending
Largest source of income
donations and private grants, 100%
Highest pay
$142,495, highest compensated employee

Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Fair: 57 out of 100. Higher than 21% of charities in its peer group (diseases, under $250k).

  • Reserves

    20 of 35

    Spendable reserves would cover 4.2 months of spending.

  • Debt

    20 of 20

    It owes 2% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 850% of income.

Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.

Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $537,461 spent. PATIENT NAVIGATION PROGRAM - THE PATIENT NAVIGATION PROGRAM SUPPORTS PATIENTS AND FAMILIES WITH UNDIAGNOSED AND ULTRA-RARE DISEASE CONDITIONS. ONCE ENROLLED, PATIENTS AND FAMILIES ARE ASSIGNED A PATIENT NAVIGATOR THAT WILL WORK WITH THEM ONE-ON-ONE TO ADDRESS THEIR NEEDS AND HELP THEM NAVIGATE THE DIAGNOSTIC AND THERAPEUTIC ODYESSEYS.
  2. $168,553 spent. GENERAL PROGRAMS - CONTINUING, STRENGTHENING, AND EXPANDING THE UNDIAGNOSED DISEASES NETWORK, A RESEARCH INSTITUTE BACKED BY THE NATIONAL INSTITUTE OF HEALTH THAT SEEKS TO PROVIDE ANSWERS FOR PATIENTS AND FAMILIES AFFECTED BY UNDIAGNOSED DISEASES.
  3. $8,535 spent. OUTREACH AND EDUCATION - UNDIAGNOSED AND ULTRA-RARE PATIENTS CAN CALL THE UDNF TO ACCESS INFORMATION ABOUT RESEARCH OPPORTUNITIES, DIAGNOSTIC RESOURCES, THERAPEUTIC MATCHING, TECHNOLOGICAL DEVELOPMENTS, SOCIAL SERVICES, AND ADVOCACY RESOURCES. WE NETWORK WITH PATIENT ADVOCACY ORGANIZATIONS, COMMUNITY HEALTH PROVIDERS, RESEARCHERS, SOCIAL SERVICE PROVIDERS, AND FUNDERS.

Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since March 2023.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.