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Organizations National Organization for Rare Disorders Inc.

National Organization for Rare Disorders Inc.

Fiscal year ending 2023. Filed on May 31, 2024.

1900 Crown Colony Dr 3rd Fl 310
Franklin Building
Quincy, Massachusetts 02169

National Organization for Rare Disorders Inc. (EIN: 13-3223946) has filed an IRS Form 990 since at least fiscal year 2016. In its fiscal year 2023 IRS Form 990 filing, National Organization for Rare Disorders Inc., a 501(c)(3) charitable organization, reported compensation for 8 out of 118 total employees. Among the employees shown here, the average compensation is $308,323. The highest compensated employee at National Organization for Rare Disorders Inc. is Peter Saltonstall with fiscal year 2023 compensation of $523,208.

Revenue, expenses, and employee compensation

Revenue

$66,397,453

Expenses

$52,832,739

Employee compensation

$11,769,993
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Peter Saltonstall
President and Chief Executive Officer
$523,208
$496,804 No related comp$26,404
Pamela Gavin
Executive Vice President
$422,733
$390,823 No related comp$31,910
Edward Neilan
Chief Medical and Scientific Officer
$329,637
$270,662 No related comp$58,975
Prashant Goel
Vice President, Information Technology
$297,198
$282,667 No related comp$14,531
Alexa Moore
Vice President, Development
$246,775
$235,028 No related comp$11,747
Lisa Sarfaty
Vice President, Community Engagement
$227,907
$173,427 No related comp$54,480
Neeta Kotecha
Vice President, Finance
$215,677
$177,102 No related comp$38,575
Jill Pollander
Vice President, Patient Services
$203,447
$179,475 No related comp$23,972

Benchmark Employee Compensation

Non-Employee Board Members

Dennis Jackman
Vice Chair
Jim Palma
Secretary
Kathleen Holcombe
Chair
Leon Eidelman
Treasurer
Lorna Weir
Director (AS of 5/4/23)
Mark Skinner
Director
Mike Porath
Director
Phillip Pearl, M.D.
Director
Shafali Jeste, M.D.
Director
Sheldon Schuster, Ph.D.
Director (AS of 5/4/23)
Steven Grossman
Director (Until 1/31/23)
Susan Berry, M.D.
Director

Contractors

Future Dmz Future Limo
Patient
$271,585
Zuckerman Spaeder
Legal
$106,386

Mission Statement

NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.

Revisions to this organization profile

June 9, 2025:
2024 National Organization for Rare Disorders Inc. 990 filed
May 31, 2024:
2023 National Organization for Rare Disorders Inc. 990 filed
May 11, 2023:
2022 National Organization for Rare Disorders Inc. 990 filed

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