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Organizations Diseases, Disorders & Medical Everylife Foundation for Rare Diseases

Everylife Foundation for Rare Diseases

Fiscal year ending 2024. Filed on July 23, 2025.

1012 14th Street NW 500
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 2024 IRS Form 990 filing, Everylife Foundation for Rare Diseases, a 501(c)(3) charitable organization, reported compensation for 6 out of 31 total employees. Among the employees shown here, the average compensation is $190,419. The highest compensated employee at Everylife Foundation for Rare Diseases is Anne Kennedy with fiscal year 2024 compensation of $279,667.

Revenue, expenses, and employee compensation

Revenue

$7,031,574

Expenses

$6,841,685

Employee compensation

$3,338,258
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Anne Kennedy
Policy and Advocacy
$279,667
$259,793 No related comp$19,874
Michael Pearlmutter
Chief Executive Officer
$210,295
$201,335 No related comp$8,960
Megan Pinegar
Chief Operating Officer
$204,883
$192,408 No related comp$12,475
Jamie Sullivan
Sr. Director of Policy
$164,390
$151,230 No related comp$13,160
Edward Brasfield
Sr Director of Develop
$141,676
$132,484 No related comp$9,192
Shannon von Felden
Sr Director of Adv
$141,600
$127,440 No related comp$14,160

Benchmark Employee Compensation

Non-Employee Board Members

Abbey Hauser
Director
Amrit Ray - Until 224
Director
Cristina Casanova Might - Until 122
Director
Frank Sasinowski
Vice Chair
Jennifer Bernstein
Secretary
Lisa Carlton
Director
Merrill Friedman
Director
Ritu Baral
Director
Shandra Trantham
Director
Stephen Groft
Treasurer
Vicky Seyfert-Margolis
Chair

Contractors

Zuckerman Gravely Management
Rent
$241,088
Faegre Drinker Biddle & Reath LLP
Consulting and Lobbying
$154,485

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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