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.
Key facts about National Organization for Rare Disorders Inc
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.
- EIN
- 13-3223946
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $101,582
- Grants made (2025)
- 4
- Average grant
- $25,396
- Median grant
- $21,250
- Total assets
- $66,900,297
- Primary geography
- Pennsylvania (41% of itemized 2025 grant dollars)
Data from IRS Form 990, 2025; updated September 2026.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$66.9M
-7.5% YoY
Annual Giving
$102K
+154.0% YoY
Grant Count
4
+100.0% YoY
Avg Grant Size
$25K
+27.0% YoY
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.
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.
Ready to take the next step with National Organization for Rare Disorders Inc?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 4 itemized grants.
States
Cities
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.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 4 recipients in 2025
The largest 2025 recipient was Trustees of the University of Pennsylvania ($42K). Together the top 4 received $102K.
Grant Size Distribution
35 grants across all recorded years
The most common grant size was under $50K: 33 grants of 35 (94%).
Giving History
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 |
| Regents Regents of the University of California Los Angeles, CA | Seed Grant Award - Acpmp | $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 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $66,900,297 | $72,321,740 | $65,154,464 |
| Revenue | $34,577,196 | $50,676,798 | $66,397,453 |
| Expenses | $40,401,111 | $43,034,462 | $52,832,739 |
| Net Investment Income | $2,697,074 | $2,611,539 | $2,493,656 |
Data update history
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
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.
Here's the math on researching National Organization for Rare Disorders Inc by hand.
Explore Open Grants
Browse active grant opportunities in National Organization for Rare Disorders Inc's focus areas in our free grants database
Similar Funders
Funders that support many of the same organizations
Emory University
Atlanta, GA
Emory University funds research, health care, and medical research, including university research awards and subcontract grants to organizations. Its 2024 grants had a median of about $87,500, though awards ranged from about $5,300 to $35.5 million; recipients were concentrated in Georgia, which received 46% of grant dollars. The profile does not state whether Emory accepts unsolicited requests.
Assets
$24.9B
Grants
362
Total Given
$183.7M
American Cancer Society Inc
Atlanta, GA
The American Cancer Society funds cancer research, patient support, advocacy, and related programs, with research support available to institutions across the United States. Its 2025 grants ranged from $5,648 to $9.6 million, with a median of $15,000. It accepts applications for research grants through specific programs and ProposalCentral; the profile does not state whether it accepts unsolicited requests for other funding.
Assets
$1.7B
Grants
509
Total Given
$23.1M
Yale University
New Haven, CT
Yale supports education, research, scholarship, preservation, public service, and community organizations, including through sponsored research and fellowships. Its 2025 grants ranged from $3,000 to $14.3 million, with a median of about $136,000; recipients were based mainly in Connecticut, California, Massachusetts, New York, and Pennsylvania. The profile does not state whether Yale accepts unsolicited requests.
Assets
$58.9B
Grants
364
Total Given
$168.2M
Cystic Fibrosis Foundation
Bethesda, MD
The Cystic Fibrosis Foundation funds cystic fibrosis research, drug development, specialized care, and related community and patient-support programs, primarily through opportunities for academic and industry investigators. Its 2024 grants ranged from $2,800 to $12.9 million, with a median grant of about $150,000; the profile does not specify a geographic limit or whether it accepts unsolicited requests.
Assets
$5.0B
Grants
624
Total Given
$189.6M
Drexel University
Philadelphia, PA
Drexel University funds research grants to universities and other organizations; its 2025 grants ranged from $5,125 to $2,208,816, with a median of $63,420. Its grants are concentrated in Pennsylvania, with additional funding in states including California, Texas, Maryland, and New Jersey. The available information does not state whether it accepts unsolicited requests.
Assets
$2.9B
Grants
120
Total Given
$16.9M
Silicon Valley Community Foundation
Mountain View, CA
Silicon Valley Community Foundation funds work in areas such as housing, economic security, education, health, the environment, arts and culture, and civic engagement, with Community Action Grants supporting local, community-led organizations in San Mateo and Santa Clara counties. Its 2024 grants had a median of $51,716, though amounts varied widely; applications depend on the program, and SVCF states that it does not accept unsolicited proposals for advised funds.
Assets
$12.3B
Grants
3,576
Total Given
$3.2B
Bristol-Myers Squibb Foundation Inc
Princeton, NJ
The Bristol-Myers Squibb Foundation supports health-access initiatives for disproportionately affected populations, including cancer, blood disorders, brain health, and clinical-trial participation, in the United States and internationally. In 2024, its median grant was $134,090, though awards varied widely; it says application materials are available upon request and advises organizations to contact it about the process, but does not state whether unsolicited requests are accepted.
Assets
$83.3M
Grants
144
Total Given
$67.7M
Boston Foundation Inc
Boston, MA
The Boston Foundation funds equity-focused work in child well-being, economic opportunity, community wealth, and community leadership, primarily in Greater Boston. Its 2025 grants had a median of $25,000, while specific programs offer awards from up to $15,000 to $50,000; it accepts applications through some competitive initiatives, but whether it accepts unsolicited requests generally is not stated.
Assets
$2.1B
Grants
2,375
Total Given
$228.4M
Eastern Bank Foundation
Wakefield, MA
Eastern Bank Foundation funds systemic efforts to advance economic inclusion and mobility, including small-business equity, early childhood development, affordable housing, and workforce development. Its programs range from $1,000–$10,000 for Community Donations, up to $15,000 for CITC Grants, and $50,000–$150,000 for Impact Grants; it supports organizations primarily in Massachusetts, New Hampshire, and Rhode Island. The foundation accepts online applications, with no specific submission deadlines stated.
Assets
$266.7M
Grants
1,786
Total Given
$19.0M
Barr Foundation
Boston, MA
Barr Foundation funds arts and creativity, climate, education, and related initiatives, primarily supporting organizations and leaders in New England. Its 2024 grants ranged from $100 to $3.275 million, with a median of $80,000. It welcomes inquiries through program pages and occasionally issues open requests for proposals; most grants go to returning partners.
Assets
$1.9B
Grants
903
Total Given
$123.2M
More Funders in Massachusetts
National Organization for Rare Disorders Inc down — hundreds of funders to go?