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Organizations National Organization for Rare Disorders Inc.

National Organization for Rare Disorders Inc.

Fiscal year ending 2024. Filed on June 9, 2025.

1900 Crown Colony Dr 3rd Fl 310
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 2024 IRS Form 990 filing, National Organization for Rare Disorders Inc., a 501(c)(3) charitable organization, reported compensation for 9 out of 124 total employees. Among the employees shown here, the average compensation is $281,776. The highest compensated employee at National Organization for Rare Disorders Inc. is Pamela Gavin with fiscal year 2024 compensation of $475,492.

Revenue, expenses, and employee compensation

Revenue

$50,676,798

Expenses

$43,034,462

Employee compensation

$12,577,235
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Pamela Gavin
Executive Vice President (Until 5/24)/Ceo (AS of 5/24)
$475,492
$441,759 No related comp$33,733
Peter Saltonstall
CEO (Until 5/24)/Ceo Emeritus (AS of 5/24)
$398,956
$374,441 No related comp$24,515
Edward Neilan
Chief Medical and Scientific Officer
$332,277
$270,662 No related comp$61,615
Prashant Goel
Vice President, Information Technology
$298,064
$283,442 No related comp$14,622
Patrick Collins
Vice President Community and Corporate Affairs
$265,586
$207,141 No related comp$58,445
Alexandra Moore
Vice President, Development
$258,059
$245,775 No related comp$12,284
Neeta Kotecha
Vice President and Chief Financial Officer
$221,966
$179,637 No related comp$42,329
Jill Pollander
Vice President, Patient Services
$208,148
$182,382 No related comp$25,766
Kelleen Esperias
Chief Strategy and Operations Officer
$77,435
$71,108 No related comp$6,327

Benchmark Employee Compensation

Non-Employee Board Members

Dennis Jackman
Director
Jim Palma
Secretary
Kathleen Holcombe
Chair
Leon Eidelman
Treasurer (Until 12/24)
Lorna Weir
Director
Mark Skinner
Director
Mike Porath
Director
Phillip Pearl, M.D.
Director
Shafali Jeste, M.D.
Director
Sheldon Schuster, Ph.D.
Vice Chair
Susan Berry, M.D.
Director
Tom Kelly
Director

Contractors

Future Dmz Future Limo
Patient
$332,640
Zuckerman Spaeder
Legal
$107,332
Kendall Square Policy Strategies LLC
Consulting
$103,087

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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