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Nonprofit · EIN 87-3474254

UNDIAGNOSED DISEASES NETWORK FOUNDATION

Also known as UDNF

Tax-exempt · WASHINGTON, DC 20005

Financials

$2.6M$218K2023$329K$1.4M2024$120K$1.1M2025
Revenue Expenses · by fiscal year end
Financials of UNDIAGNOSED DISEASES NETWORK FOUNDATION by year, from its e-filed returns
Year endedFormRevenueExpensesNet incomeTotal assetsLiabilitiesNet assets
December 31, 2025990-EZ$120,373$1,144,059-$1,023,686$410,501$9,480$401,021
December 31, 2024990$328,998$1,427,906-$1,098,908$1,444,511$47,368$1,397,143
December 31, 2023990$2,579,825$218,337$2,361,488$2,406,337$35,236$2,371,101
Financial details: 990-EZ for the year ended December 31, 2025

Revenue

Contributions, gifts and grants
$120,332
Program service revenue
$0
Investment income
$41
Other revenue
$0

Expenses

Grants and similar amounts paid
$3,080
Compensation of officers, directors and key employees
$256,037
Salaries, compensation and benefits (total)
$673,277
Professional fees and payments to contractors
$305,947
Printing, publications and postage
$1,082
Other expenses
$160,673
Program services (functional)
$714,549

Balance sheet and other

Total assets, start of year
$1,444,511
Total assets, end of year
$410,501
Total liabilities, end of year
$9,480
Net assets, end of year
$401,021
Cash, savings and investments
$408,847
Gross receipts
$120,373

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990-EZ for the year ended December 31, 2025, highest compensation first.

NameTitleHours / weekCompensation
MICHELE HERNDONHIGHEST COMPENSATED EMPLOYEE40$142,495
DANIELLE CARNIVALCEO40$113,542
MEGHAN HALLEYEMERITUS BOARD MEMBER2$0
F SESSIONS COLEVICE CHAIR/CHAIR10$0
TROY EVANSTREASURER5$0
EFFIE PARKSBOARD MEMBER2$0
GERALD SWEENEYBOARD MEMBER/VICE CHAIR2$0
LILIANA FERNANDEZBOARD MEMBER2$0
PARVATHY KRISHNANBOARD MEMBER2$0
SIKA DUNYOHCHAIR/BOARD MEMBER2$0
STEPHAN ZUCHNERBOARD MEMBER2$0
TOM KELLEYBOARD MEMBER2$0
KELLY CERVENTESSECRETARY5$0
TANIA SIMONCELLIBOARD MEMBER2$0
MAX BRONSTEINBOARD MEMBER2$0
990 for the year ended December 31, 2024: 16 people
NameTitleHours / weekCompensation
AMY GRAYCEO
Officer
40$352,756
STEPHANIE TOMLINSONBOARD MEMBER
Trustee or director
2$1,554
MEGHAN HALLEYBOARD CHAIRMAN
Trustee or director, Officer
10$0
F SESSIONS COLESECRETARY
Trustee or director, Officer
10$0
TROY EVANSTREASURER
Trustee or director, Officer
10$0
ANNE PARISERBOARD MEMBER
Trustee or director
2$0
EFFIE PARKSBOARD MEMBER
Trustee or director
2$0
GERALD SWEENEYBOARD MEMBER
Trustee or director
2$0
LILIANA FERNANDEZBOARD MEMBER
Trustee or director
2$0
PARVATHY KRISHNANBOARD MEMBER
Trustee or director
2$0
SIKA DUNYOHBOARD MEMBER
Trustee or director
2$0
STEPHAN ZUCHNERBOARD MEMBER
Trustee or director
2$0
TOM KELLEYBOARD MEMBER
Trustee or director
2$0
TANIA SIMONCELLIBOARD MEMBER
Trustee or director
2$0
JESSICA SWANSONBORAD MEMBER
Trustee or director
2$0
KELLY CERVENTESBOARD MEMBER
Trustee or director
2$0
990 for the year ended December 31, 2023: 14 people
NameTitleHours / weekCompensation
AMY GRAYCEO
Officer
40$95,146
MEGHAN HALLEYBOARD CHAIRMAN
Trustee or director, Officer
10$0
F SESSIONS COLESECRETARY
Trustee or director, Officer
10$0
TROY EVANSTREASURER
Trustee or director, Officer
10$0
ANNE PARISERBOARD MEMBER
Trustee or director
2$0
EFFIE PARKSBOARD MEMBER
Trustee or director
2$0
GERALD SWEENEYBOARD MEMBER
Trustee or director
2$0
LILIANA FERNANDEZBOARD MEMBER
Trustee or director
2$0
PARVATHY KRISHNANBOARD MEMBER
Trustee or director
2$0
SIKA DUNYOHBOARD MEMBER
Trustee or director
2$0
STEPHAN ZUCHNERBOARD MEMBER
Trustee or director
2$0
TOM KELLEYBOARD MEMBER
Trustee or director
2$0
TANIA SIMONCELLIBOARD MEMBER
Trustee or director
2$0
HELENE CEDERROTHVICE CHAIRMAN
Officer
10$0

Address and contacts

Address (IRS master file)
1012 14TH ST NW STE 500, WASHINGTON, DC 20005-3406
Mailing address (990-N for 2022)
1012 14TH STREET NW SUITE 500, WASHINGTON DC 20005
Principal officer (990-N for 2022)
AMY GRAY, 1012 14TH STREET NW SUITE 500, WASHINGTON DC 20005
Signed the 990-EZ
TROY EVANS, TREASURER
Phone
(202) 599-4465
Website
udnf.org
Return prepared by
EASY OFFICE DBA JITASA

Mission

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.

990-EZ for the year ended December 31, 2025

Program accomplishments

  • 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.
    Expenses $537,461 · grants $3,080
  • 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.
    Expenses $168,553
  • 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.
    Expenses $8,535

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

Tax yearYear endedDueIRS public records
2025December 31, 2025May 15, 2026990-EZ on file
2024December 31, 2024May 15, 2025990 on file
2023December 31, 2023May 15, 2024990 on file

IRS record

EIN
87-3474254
Tax-exempt status
501(c)(3): Charitable, religious, educational or scientific organization
Foundation status
Publicly supported organization (170(b)(1)(A)(vi))
Donations deductible (Pub 78)
Public charity, 50% deduction limit
Exempt since
2023
Accounting year ends
December
Files
Form 990 or 990-EZ
Assets (IRS master file)
$410,501
Income (IRS master file)
$120,373

Filing history

FormYear endedRevenueExpensesAssetsReturn
990-EZDecember 2025$120,373$1,144,059$410,501IRS
990December 2024$328,998$1,427,906$1,444,511XML
990December 2023$2,579,825$218,337$2,406,337XML
990-N for 2022
Officer: AMY GRAY
December 31, 2022≤ $50,000 receipts––e-Postcard
990-EZDecember 2021–––IRS

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 87-3474254).

Questions about UNDIAGNOSED DISEASES NETWORK FOUNDATION

What is the EIN of UNDIAGNOSED DISEASES NETWORK FOUNDATION?
The employer identification number (EIN) of UNDIAGNOSED DISEASES NETWORK FOUNDATION is 87-3474254.
Is UNDIAGNOSED DISEASES NETWORK FOUNDATION tax-exempt?
Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2023.
Are donations to UNDIAGNOSED DISEASES NETWORK FOUNDATION tax-deductible?
Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
Which annual return does UNDIAGNOSED DISEASES NETWORK FOUNDATION file?
Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
When is the next return of UNDIAGNOSED DISEASES NETWORK FOUNDATION due?
The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
When did UNDIAGNOSED DISEASES NETWORK FOUNDATION last file with the IRS?
The latest return in the IRS public files is the 990-EZ for the year ended December 2025.
Who is the principal officer of UNDIAGNOSED DISEASES NETWORK FOUNDATION?
The 990-N for 2022 names AMY GRAY.
Who are the officers and directors of UNDIAGNOSED DISEASES NETWORK FOUNDATION?
The 990-EZ for the year ended December 31, 2025 lists 15 people; 2 received compensation from the organization, the highest $142,495 (MICHELE HERNDON, HIGHEST COMPENSATED EMPLOYEE).
How much revenue does UNDIAGNOSED DISEASES NETWORK FOUNDATION have?
On its 990-EZ for the year ended December 31, 2025 it reported revenue of $120,373, expenses of $1,144,059 and total assets of $410,501 at year end.

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