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.
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.
Other programs - columbus foundation grant
Financials
FY 2024
Revenue
Expenses
People
16 listed
AMY GRAY
CEO
$353K
40 hrs/wk
STEPHANIE TOMLINSON
BOARD MEMBER
$2K
2 hrs/wk
MEGHAN HALLEY
BOARD CHAIRMAN
—
10 hrs/wk
F SESSIONS COLE
SECRETARY
—
10 hrs/wk
TROY EVANS
TREASURER
—
10 hrs/wk
ANNE PARISER
BOARD MEMBER
—
2 hrs/wk
EFFIE PARKS
BOARD MEMBER
—
2 hrs/wk
GERALD SWEENEY
BOARD MEMBER
—
2 hrs/wk
LILIANA FERNANDEZ
BOARD MEMBER
—
2 hrs/wk
PARVATHY KRISHNAN
BOARD MEMBER
—
2 hrs/wk
SIKA DUNYOH
BOARD MEMBER
—
2 hrs/wk
STEPHAN ZUCHNER
BOARD MEMBER
—
2 hrs/wk
TOM KELLEY
BOARD MEMBER
—
2 hrs/wk
TANIA SIMONCELLI
BOARD MEMBER
—
2 hrs/wk
JESSICA SWANSON
BORAD MEMBER
—
2 hrs/wk
KELLY CERVENTES
BOARD MEMBER
—
2 hrs/wk
Independent contractors
AMY GRAY
STRATEGIC LEADERSHIP
MICHELLE HERNDON
PATIENT NAVIGATION
CHRISTIAN BAILEY SISCOE
PATIENT NAVIGATION
FINN PARTNERS INC
COMMUNICATIONS SUPPORT
Grants received
Showing 4 of 4
Funded by
$2.6M from 3 funders · 4 grants · 2023–2024
$2.5M · 1 grant · 2023
$38K · 2 grants · 2023–2024
$13K · 1 grant · 2024