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.
Key facts about National Organization for Rare
- EIN
- 13-3223946
- Latest 990 filing
- Form 990-PF, 2024
- Annual giving (2024)
- $40,000
- Grants made (2024)
- 2
- Average grant
- $20,000
- Median grant
- $20,000
- Total assets
- $72,321,740
- Primary geography
- Pennsylvania (100% of itemized 2024 grant dollars)
Data from IRS Form 990-PF, 2024; updated September 2026.
How National Organization for Rare gives
- Giving fell 90% from 2021 to 2024. Method
From the foundation's IRS Form 990-PF filings. Methodology.
Next steps with National Organization for Rare
- How to evaluate National Organization for Rare as a funder
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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
Share of all 2 itemized 2024 grant dollars.
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 | — | — | — |
Data update history
When this profile's IRS filing data changed on Grantable
- IRS filings on file for fiscal years 2020–2024
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
Among its reported 2024 grants, the largest recipients include Drexel University ($25,000), Children's Hospital of Philadelphia ($15,000).
| Recipient | Purpose | Amount |
|---|---|---|
| DREXEL UNIVERSITY Philadelphia, PA | FINAL PAYMENT FOR ACPMP RESEARCH GRANT NORD ID 15005 | $25,000 |
| CHILDREN'S HOSPITAL OF PHILADELPHIA Philadelphia, PA | FIRST PAYMENT OF 2 FOR MMIHS RESEARCH | $15,000 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 IRS 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 |
Frequently Asked Questions
How large is National Organization for Rare?
As of 2024, National Organization for Rare holds $72.3M in total assets with $50.7M in annual revenue. It awarded 2 grants totaling $40K in 2024.
Where does National Organization for Rare operate?
National Organization for Rare has awarded grants in California, Florida, Illinois, Massachusetts, Maryland, Minnesota, Mississippi, North Carolina, New Jersey, New York, Ohio, Oklahoma, Pennsylvania, South Carolina, Texas, Wisconsin.
What size grants does National Organization for Rare award?
In 2024, National Organization for Rare awarded 2 grants totaling $40K — an average of about $20K per grant, based on its IRS Form 990 filings.
What is National Organization for Rare's EIN?
National Organization for Rare's EIN (Employer Identification Number) is 13-3223946. IRS Form 990 filing data is available on this page for 2020–2024.
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Data last updated September 2026. Sourced from IRS Form 990-PF filings.