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EVERYLIFE FOUNDATION FOR RARE DISEASES

WASHINGTON, DCEIN: 26-4614274Website

Data sourced from IRS 990 public filings

EVERYLIFE FOUNDATION FOR RARE DISEASES THE EVERYLIFE FOUNDATION FOR RARE DISEASES IS DEDICATED TO ADVANCING THE DEVELOPMENT OF TREATMENT AND DIAGNOSTIC OPPORTUNITIES FOR RARE DISEASE PATIENTS THROUGH SCIENCE-DRIVEN PUBLIC POLICY.

Low-Income/Economically Disadvantaged
National
Policy Advocacy & Legislative Reform
Education & Awareness
Medical Research
Disease-Specific Services
Government Accountability & Transparency
Health

Annual Revenue

$7,031,574

Known Funders

9

Grants Received

12

Financial History

YearRevenueExpensesAssets
2024$7,031,574$6,841,685$6,217,588
2023$6,794,644$6,057,115$5,806,862
2022$5,789,261$5,792,631$4,495,405
2021$5,479,237$5,088,034$4,550,600
2020$4,425,797$4,005,266$4,267,657
2016$2,222,355$2,207,163$651,805
2015$1,787,563$1,699,639$516,371
2014$1,351,627$1,214,362$436,978

Top Funders

$500,000 (2023)
$225,000 (2021)
$222,495 (2022)
DANAHER FOUNDATION

WASHINGTON, DC

$100,000 (2022)
$75,000 (2022)
$50,000 (2021)
$15,000 (2023)

Key Personnel

From 2024 IRS 990 filing

A

Anne Kennedy

Policy & Advocacy

M

Michael Pearlmutter

CEO

Officer
M

Megan Pinegar

COO

J

Jamie Sullivan

Sr. Dir of Policy

E

Edward Brasfield

Sr Dir of Develop

S

Shannon Von Felden

Sr Director of Adv

V

Vicky Seyfert-Margolis

Chair

Officer
F

Frank Sasinowski

Vice Chair

Officer
S

Stephen Groft

Treasurer

Officer
J

Jennifer Bernstein

Secretary

Officer

Showing 10 of 17 key personnel.

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