NonprofitsUndiagnosed Diseases Network Foundation

Voluntary Health Associations & Medical Disciplines

Undiagnosed Diseases Network Foundation

WASHINGTON, DC

Total revenue

$329K

Total expenses

$1.4M

Net assets

$1.4M

Grants received

$2.6M

4 grants

EIN

873474254

Tax year

2024

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.

Programs

3 programs

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: $439K

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: $16K

Other programs - columbus foundation grant

Expenses: $3K

Financials

FY 2024

Revenue

Contributions & grants$324K
Program service revenue
Investment income$5K
Other revenue
Total revenue$329K

Expenses

Grants paid$3K
Salaries & benefits$354K
Fundraising$8K
Other expenses$1.1M
Total expenses$1.4M
Total assets$1.4M
Net assets$1.4M

People

16 listed

NameRoleCompensation

AMY GRAY

CEO

Board

$353K

40 hrs/wk

STEPHANIE TOMLINSON

BOARD MEMBER

Board

$2K

2 hrs/wk

MEGHAN HALLEY

BOARD CHAIRMAN

Board

10 hrs/wk

F SESSIONS COLE

SECRETARY

Board

10 hrs/wk

TROY EVANS

TREASURER

Board

10 hrs/wk

ANNE PARISER

BOARD MEMBER

Board

2 hrs/wk

EFFIE PARKS

BOARD MEMBER

Board

2 hrs/wk

GERALD SWEENEY

BOARD MEMBER

Board

2 hrs/wk

LILIANA FERNANDEZ

BOARD MEMBER

Board

2 hrs/wk

PARVATHY KRISHNAN

BOARD MEMBER

Board

2 hrs/wk

SIKA DUNYOH

BOARD MEMBER

Board

2 hrs/wk

STEPHAN ZUCHNER

BOARD MEMBER

Board

2 hrs/wk

TOM KELLEY

BOARD MEMBER

Board

2 hrs/wk

TANIA SIMONCELLI

BOARD MEMBER

Board

2 hrs/wk

JESSICA SWANSON

BORAD MEMBER

Board

2 hrs/wk

KELLY CERVENTES

BOARD MEMBER

Board

2 hrs/wk

Independent contractors

AMY GRAY

STRATEGIC LEADERSHIP

$353K

MICHELLE HERNDON

PATIENT NAVIGATION

$163K

CHRISTIAN BAILEY SISCOE

PATIENT NAVIGATION

$108K

FINN PARTNERS INC

COMMUNICATIONS SUPPORT

$101K

Grants received

Showing 4 of 4

FromAmountPurposeYear
$20K
HEALTH
2024
$18K
HEALTH
2023

Funded by

$2.6M from 3 funders · 4 grants · 2023–2024

Silicon Valley Community Foundation

$2.5M · 1 grant · 2023

Columbus Foundation

$38K · 2 grants · 2023–2024

Details

EIN873474254
NTEE codeG12
Subsection03
Ruling date2023-03
Formed2021
Employees0
Volunteers25
UNDIAGNOSED DISEASES NETWORK FOUNDATION — Mission, Financials & Grants Received | Grantivo