National Organization for Rare
NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$72.3M
+11.0% YoY
Annual Giving
$40K
-83.2% YoY
Grant Count
2
-77.8% YoY
Avg Grant Size
$20K
-24.6% YoY
About National Organization for Rare
Based on IRS filings
National Organization for Rare is a nonprofit organization, based in QUINCY, MA. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $72.3M in total assets. In 2024, it awarded 2 grants totaling $40K. Net investment income was $2.6M.
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $72,321,740 | $65,154,464 | $49,542,120 |
| Revenue | $50,676,798 | $66,397,453 | $59,872,383 |
| Expenses | $43,034,462 | $52,832,739 | $48,420,739 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $2,611,539 | $2,493,656 | $400,603 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2024
Grant Size Distribution
45 grants across all recorded years
Giving History
Grant recipients and amounts by year
No grants recorded for .
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| PETER SALTONSTALL | CEO (UNTIL 5/24)/CEO EMERITUS (AS OF 5/24) | 35 | $374,441 |
| KATHLEEN HOLCOMBE | CHAIR | 10 | — |
| SHELDON SCHUSTER PHD | VICE CHAIR | 5 | — |
| LEON EIDELMAN | TREASURER (UNTIL 12/24) | 5 | — |
| JIM PALMA | SECRETARY | 5 | — |
| DENNIS JACKMAN | DIRECTOR | 1 | — |
| MARK SKINNER | DIRECTOR | 1 | — |
| SUSAN BERRY MD | DIRECTOR | 1 | — |
| SHAFALI JESTE MD | DIRECTOR | 1 | — |
| PHILLIP PEARL MD | DIRECTOR | 1 | — |
| MIKE PORATH | DIRECTOR | 1 | — |
| TOM KELLY | DIRECTOR | 1 | — |
| LORNA WEIR | DIRECTOR | 1 | — |
| PAMELA GAVIN | EVP (UNTIL 5/24)/CEO (AS OF 5/24) | 35 | $441,759 |
| NEETA KOTECHA | VP & CFO | 35 | $179,637 |
| KELLEEN ESPERIAS | CHIEF STRATEGY & OPERATIONS OFFICER | 35 | $71,108 |
| EDWARD NEILAN | CHIEF MEDICAL & SCIENTIFIC OFFICER | 35 | $270,662 |
| PRASHANT GOEL | VP INFORMATION TECHNOLOGY | 35 | $283,442 |
| PATRICK COLLINS | VP COMMUNITY & CORPORATE AFFAIRS | 35 | $207,141 |
| ALEXANDRA MOORE | VP OF DEVELOPMENT | 35 | $245,775 |
| JILL POLLANDER | VP PATIENT SERVICES | 35 | $182,382 |
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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