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Organizations Diseases, Disorders & Medical Everylife Foundation for Rare Diseases

Everylife Foundation for Rare Diseases

Fiscal year ending 2020. Filed on August 6, 2021.

1012 14th Street NW
Washington, District of Columbia 20005

Everylife Foundation for Rare Diseases (EIN: 26-4614274) has filed an IRS Form 990 between fiscal years 2016 and 2024. In its fiscal year 2020 IRS Form 990 filing, Everylife Foundation for Rare Diseases, a 501(c)(3) charitable organization, reported compensation for 6 out of 18 total employees. Among the employees shown here, the average compensation is $143,580. The highest compensated employee at Everylife Foundation for Rare Diseases is Julia Jenkins with fiscal year 2020 compensation of $211,382.

Revenue, expenses, and employee compensation

Revenue

$4,425,797

Expenses

$4,005,266

Employee compensation

$1,773,116
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Julia Jenkins
Executive Director
$211,382
$192,681 No related comp$18,701
Anne Kennedy
Policy and Advocacy
$173,034
$162,749 No related comp$10,285
Carol Kennedy
Development
$129,483
$129,483 No related compNo other comp
Megan Pinegar
Sr Director HR
$123,061
$123,061 No related compNo other comp
Britta Dornan
Communications
$117,711
$117,711 No related compNo other comp
Edward Brasfield
Development
$106,808
$106,808 No related compNo other comp

Benchmark Employee Compensation

Non-Employee Board Members

Emil Kakkis
Director
Frank Sasinowski
Vice President
Jennifer Bernstein
Director
Mark Dant
President
Ray Amrit
Director
Richard Finkel
Director
Ritu Baral
Director
Vicky Seyfert-Margolis
Treasurer

Mission Statement

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.

Revisions to this organization profile

July 23, 2025:
2024 Everylife Foundation for Rare Diseases 990 filed
August 2, 2024:
2023 Everylife Foundation for Rare Diseases 990 filed
July 11, 2023:
2022 Everylife Foundation for Rare Diseases 990 filed

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