National Organization for Rare Disorders Inc
Nord strives to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy.
National Organization for Rare Disorders Inc at a glance
In short: National Organization for Rare Disorders Inc gave $102K across 4 grants in 2025 (avg $25K), top state Pennsylvania. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $101,582
- +154.0% vs 2024
- Grants made (2025)
- 4
- +100.0% vs 2024
- Average grant
- $25,396
- +27.0% vs 2024
- Median grant
- $21,250
- Total assets
- $66,900,297
- -7.5% vs 2024
- Primary geography
- Pennsylvania (41% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who National Organization for Rare Disorders Inc funds
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2025
The largest 2025 recipient was Trustees of the University of Pennsylvania ($42K). Together the top 3 received $77K.
Organizations only. It also paid 1 grant to individuals ($25,000), which are not listed by name.
Grant Size Distribution
35 grants across all recorded years
The most common grant size was under $50K: 33 grants of 35 (94%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 4 itemized grants.
States
Cities
How National Organization for Rare Disorders Inc gives
- Giving fell 35% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2025, annual grant giving ranged from $40K (2024) to $421K (2021). In 2025 it made 4 grants totaling $102K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Trustees of the University of Pennsylvania Philadelphia, PA | Trustees of the University of Pennsylvania | $41,807 |
| 1 grant to individuals Recipients not named | — | $25,000 |
| Duke University Office of Sponsored Programs Charlotte, NC | AVM Research at Duke University | $17,500 |
| Regents of the University of Colorado Aurora, CO | Biliary Artesia Seed Grant Award | $17,275 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $66,900,297 | $34,577,196 | $40,401,111 | $101,582 | 4 | $2,697,074 |
| 2024 | $72,321,740 | $50,676,798 | $43,034,462 | $40,000 | 2 | $2,611,539 |
| 2023 | $65,154,464 | $66,397,453 | $52,832,739 | $238,574 | 9 | $2,493,656 |
| 2022 | $49,542,120 | $59,872,383 | $48,420,739 | $155,487 | 6 | $400,603 |
| 2021 | $37,875,246 | $43,188,172 | $57,720,517 | $420,936 | 14 | $242,173 |
| 2020 | $52,774,540 | $42,843,360 | $52,712,119 | $157,237 | 14 | $349,621 |
| 2019 | $61,751,096 | $52,413,377 | $41,789,694 | $222,733 | 9 | $595,629 |
About National Organization for Rare Disorders Inc
Based on IRS filings
National Organization for Rare Disorders Inc is a public charity, based in Norwell, MA. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $66.9M in total assets. In 2025, it awarded 4 grants totaling $102K. Net investment income was $2.7M.
Leadership & Key People
Officers and directors from IRS filings
National Organization for Rare Disorders Inc is led by Pamela Gavin, CEO since 2025 (on filings since 2019); 9 of 24 officers listed in 2025 are compensated.
Officers on the 2025 filing
Pamela Gavin
CEO
Executive Vice President → Executive Vice President & CEO, 2024
Executive Vice President & CEO → CEO, 2025
On filings since 2019
35 hrs/week
$315K (2019) → $480K (2025)
Kathleen Holcombe
Chair
Director & Chair → Chair, 2021
On filings since 2020
10 hrs/week
No compensation reported
Jim Palma
Director
Director → Secretary, 2023
Secretary → Director, 2025
On filings since 2019
1 hr/week
No compensation reported
Mike Porath
Director
On filings since 2019
1 hr/week
No compensation reported
Philip Pearl MD
Director
On filings since 2019
1 hr/week
No compensation reported
Shafali Jeste MD
Director
On filings since 2019
1 hr/week
No compensation reported
Sheldon M. Schuster PhD
Director
Director → Vice Chair, 2024
Vice Chair → Director, 2025
On filings since 2019
1 hr/week
No compensation reported
Susan Berry MD
Director
On filings since 2019
1 hr/week
No compensation reported
Tom Kelly
Director
On filings since 2023
1 hr/week
No compensation reported
Alan Miller MD PhD
Director
New on the 2025 filing
1 hr/week
No compensation reported
Kim Isenberg
Director
New on the 2025 filing
1 hr/week
No compensation reported
Paul Lyons
Director
New on the 2025 filing
1 hr/week
No compensation reported
Steven Mah PhD
Director
New on the 2025 filing
1 hr/week
No compensation reported
Jill Pollander
Vice President Patient Services
Director of Patient Services → Vice President Patient Services, 2021
On filings since 2019
35 hrs/week
$123K (2019) → $188K (2025)
Peter Saltonstall
Senior Advisor & CEO Emeritus
President & CEO → CEO & CEO Emeritus, 2024
CEO & CEO Emeritus → Senior Advisor & CEO Emeritus, 2025
On filings since 2019
17 hrs/week
$399K (2019) → $47K (2025)
Prashant Goel
Vice President Information Technology
On filings since 2020
35 hrs/week
$225K (2020) → $293K (2025)
Edward Neilan
Chief Medical & Scientific Officer
On filings since 2021
35 hrs/week
$181K (2021) → $271K (2025)
Neeta Kotecha
Vice President & CFO
Vice President Finance → Vice President & CFO, 2024
On filings since 2022
35 hrs/week
$35K (2022) → $186K (2025)
Alexandra Moore
Vice President of Development
On filings since 2024
35 hrs/week
$246K (2024) → $254K (2025)
Kelleen Esperias
Chief Strategy & Operations Officer
On filings since 2024
35 hrs/week
$71K (2024) → $294K (2025)
Tracey Sikora
Vice President of Research & Clinical Programs
New on the 2025 filing
35 hrs/week
$194K (2025)
Dennis Jackman
Vice Chair
Vice Chair → Director, 2024
Director → Vice Chair, 2025
On filings since 2021
5 hrs/week
No compensation reported
Mark Skinner
Treasurer
Vice Chair → Director, 2023
Director → Treasurer, 2025
On filings since 2022
5 hrs/week
No compensation reported
Lorna Weir
Secretary
Director → Secretary, 2025
On filings since 2023
5 hrs/week
No compensation reported
Former officers (17)
- Former: Leon Eidelman (2022–2024) — Treasurer
- Former: Patrick Collins (2024) — Vice President Community & Corporate Affairs
- Former: Alexa Moore (2019–2023) — Vice President of Development
- Former: Steven Grossman (2019–2023) — Director
- Former: Lisa Sarfaty (2023) — Vice President Community Engagement
- Former: Frederick Barr MD (2019–2022) — Director
- Former: Susan Hedstrom (2019–2022) — Director
- Former: Vincent J. Murphy Jr. (2019–2022) — Vice President Finance
- Former: Heidi Ross (2022) — Vice President Policy & Regulatory Affairs
- Former: Rachel Sher (2019–2021) — Vice President Policy & Regulatory Affairs
- Former: Ronald J. Bartek (2019–2021) — Director
- Former: Marshall L. Summar MD (2019–2020) — Chair
- Former: Neil Horikoshi (2019–2020) — Director
- Former: Tim Ehrhard (2019–2020) — Director of It
- Former: James Berg (2019) — Principal Software Architect
- Former: Kay Holcombe (2019) — Director
- Former: Vicki McCarrell (2019) — Director
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $480K, to Pamela Gavin (CEO). 9 officers or directors reported compensation on that filing.
Frequently asked questions about National Organization for Rare Disorders Inc
How much does National Organization for Rare Disorders Inc give each year?
National Organization for Rare Disorders Inc gave $102K across 4 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $40K across 2 grants.
What is National Organization for Rare Disorders Inc's typical grant size?
National Organization for Rare Disorders Inc's median grant in 2025 was $21,250, and its average grant was $25,396, across 4 grants on its 2025 IRS Form 990.
Where does National Organization for Rare Disorders Inc give grants?
National Organization for Rare Disorders Inc's top state is Pennsylvania, with 41% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were California (25%) and North Carolina (17%).
Does National Organization for Rare Disorders Inc give general operating support?
Not in 2025: none of the 4 grants with a stated purpose on National Organization for Rare Disorders Inc's 2025 IRS Form 990 were described as general or operating support.
How large is National Organization for Rare Disorders Inc?
National Organization for Rare Disorders Inc reported $66.9M in total assets on its 2025 IRS Form 990. Its revenue that year was $34.6M.
What is National Organization for Rare Disorders Inc's EIN?
National Organization for Rare Disorders Inc's EIN (Employer Identification Number) is 13-3223946. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(8)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS July 16, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS September 28, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS May 11, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 31, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS June 9, 2025)
- Added Form 990 for fiscal year 2019 (received by the IRS August 4, 2020)
- Added Form 990 for fiscal year 2025 (received by the IRS May 28, 2026)
- IRS filings on file for fiscal years 2020–2024
Other open foundation grants in Massachusetts
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