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NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$50.7M
Program Spending
83%
of total expenses go to program services
Total Contributions
$40.4M
Total Expenses
▼$43M
Total Assets
$72.3M
Total Liabilities
▼$3.7M
Net Assets
$68.6M
Officer Compensation
→$1.2M
Other Salaries
$8.9M
Investment Income
$2.6M
Fundraising
▼N/A
Tax Year 2024 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $40K
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
DREXEL UNIVERSITY23-1352630 | PHILADELPHIA, PA | $25K | Cash | FINAL PAYMENT FOR ACPMP RESEARCH GRANT NORD ID 15005 |
CHILDREN'S HOSPITAL OF PHILADELPHIA23-1352166 | PHILADELPHIA, PA | $15K | Cash | FIRST PAYMENT OF 2 FOR MMIHS RESEARCH |
| Total | $40K | |||
PHILADELPHIA, PA
$25K
PHILADELPHIA, PA
$15K
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$250K
Awards Found
1
| Awarding Agency | Description | Amount | Fiscal Year | Period | Link |
|---|---|---|---|---|---|
| Department of Health and Human Services | DISEASE NATURAL HISTORY DATABASE DEVELOPMENT | $250K | FY2015 | Sep 2015 – Sep 2016 | Open → |
Department of Health and Human Services
$250K
DISEASE NATURAL HISTORY DATABASE DEVELOPMENT
Source: Federal Audit Clearinghouse (fac.gov)
Total Audits
6
Clean Audits
6
Material Weakness
No
Noncompliance Issues
No
| Year | Status | Financial Report | Federal Expenditure | Low Risk | Accepted |
|---|---|---|---|---|---|
| 2025 | Clean | Unmodified (Clean) | $1.2M | Yes | 2026-06-04 |
| 2024 | Clean | Unmodified (Clean) | $1.6M | Yes | 2025-06-30 |
| 2023 | Clean | Unmodified (Clean) | $2.1M | Yes | 2024-06-28 |
| 2022 | Clean | Unmodified (Clean) | $1.4M | Yes | 2023-05-23 |
| 2021 | Clean | Unmodified (Clean) | $1.7M | No | 2022-09-29 |
| 2020 | Clean | Unmodified (Clean) | $2.1M | No | 2021-08-08 |
Financial Report
Unmodified (Clean)
Federal Expenditure
$1.2M
Financial Report
Unmodified (Clean)
Federal Expenditure
$1.6M
Financial Report
Unmodified (Clean)
Federal Expenditure
$2.1M
Financial Report
Unmodified (Clean)
Federal Expenditure
$1.4M
Financial Report
Unmodified (Clean)
Federal Expenditure
$1.7M
Financial Report
Unmodified (Clean)
Federal Expenditure
$2.1M
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $50.7M | $40.4M | $43M | $72.3M | $68.6M |
| 2023IRS e-File | $66.4M | $55.6M | $52.8M | $65.2M | $60.6M |
| 2022 | $59.9M | $51.4M | $48.4M | $49.5M | $46.3M |
| 2021 | $43.2M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
| Tax Year | Form Type | Source | Documents |
|---|---|---|---|
| 2024 | 990 | IRS e-File | PDF not yet published by IRSView Filing → |
| 2023 | 990 | DataIRS e-File | PDF not yet published by IRSView Filing → |
| 2022 | 990 | DataIRS e-File |
Financial data: IRS e-Filed Form 990 (Tax Year 2024)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Federal grants: USAspending.gov (live)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Pamela Gavin | EVP (until 5/24)/ceo (as Of 5/24) | 35 | $441.8K | $0 | $33.7K | $475.5K |
| Peter Saltonstall | CEO (until 5/24)/ceo Emeritus (as Of 5/24) | 35 | $374.4K | $0 | $24.5K | $399K |
| Neeta Kotecha | VP & CFO | 35 | $179.6K | $0 | $42.3K | $222K |
| Kelleen Esperias | Chief Strategy & Operations Officer | 35 | $71.1K | $0 | $6,327 | $77.4K |
| Kathleen Holcombe | Chair | 10 | $0 | $0 | $0 | $0 |
| Sheldon Schuster Phd | Vice Chair | 5 | $0 | $0 | $0 | $0 |
| Leon Eidelman | Treasurer (until 12/24) | 5 | $0 | $0 | $0 | $0 |
| Jim Palma | Secretary | 5 | $0 | $0 | $0 | $0 |
Pamela Gavin
EVP (until 5/24)/ceo (as Of 5/24)
$475.5K
Hrs/Wk
35
Compensation
$441.8K
Related Orgs
$0
Other
$33.7K
Peter Saltonstall
CEO (until 5/24)/ceo Emeritus (as Of 5/24)
$399K
Hrs/Wk
35
Compensation
$374.4K
Related Orgs
$0
Other
$24.5K
Neeta Kotecha
VP & CFO
$222K
Hrs/Wk
35
Compensation
$179.6K
Related Orgs
$0
Other
$42.3K
Kelleen Esperias
Chief Strategy & Operations Officer
$77.4K
Hrs/Wk
35
Compensation
$71.1K
Related Orgs
$0
Other
$6,327
Kathleen Holcombe
Chair
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Sheldon Schuster Phd
Vice Chair
$0
Hrs/Wk
5
Compensation
$0
Related Orgs
$0
Other
$0
Leon Eidelman
Treasurer (until 12/24)
$0
Hrs/Wk
5
Compensation
$0
Related Orgs
$0
Other
$0
Jim Palma
Secretary
$0
Hrs/Wk
5
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Edward Neilan | Chief Medical & Scientific Officer | 35 | $270.7K | $0 | $61.6K | $332.3K |
| Prashant Goel | VP Information Technology | 35 | $283.4K | $0 | $14.6K | $298.1K |
| Patrick Collins | VP Community & Corporate Affairs | 35 | $207.1K |
Edward Neilan
Chief Medical & Scientific Officer
$332.3K
Hrs/Wk
35
Compensation
$270.7K
Related Orgs
$0
Other
$61.6K
Prashant Goel
VP Information Technology
$298.1K
Hrs/Wk
35
Compensation
$283.4K
Related Orgs
$0
Other
$14.6K
Patrick Collins
VP Community & Corporate Affairs
$265.6K
Hrs/Wk
35
Compensation
$207.1K
Related Orgs
$0
Other
$58.4K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Dennis Jackman | Director | 1 | $0 | $0 | $0 | $0 |
| Lorna Weir | Director | 1 | $0 | $0 | $0 | $0 |
| Mark Skinner | Director | 1 | $0 | $0 | $0 | $0 |
| Mike Porath | Director | 1 | $0 | $0 | $0 | $0 |
| Phillip Pearl Md | Director | 1 | $0 | $0 | $0 | $0 |
| Shafali Jeste Md | Director | 1 |
Dennis Jackman
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Lorna Weir
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Mark Skinner
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
| $36.7M |
| $57.7M |
| $37.9M |
| $34.9M |
| 2020 | $42.8M | $36.7M | $52.7M | $52.8M | $49.6M |
| 2019 | $52.4M | $43.6M | $41.8M | $61.8M | $59.4M |
| 2018 | $47.1M | $42.1M | $34.1M | $50.8M | $48.7M |
| 2017 | $48.1M | $43M | $33M | $38.3M | $35.7M |
| 2016 | $38.2M | $34.7M | $28.7M | $23.4M | $20.5M |
| 2015 | $20.4M | $18.7M | $19.5M | $13.8M | $11M |
| 2014 | $27.6M | $25.1M | $23.2M | $15.3M | $10.1M |
| 2013 | $16.5M | $15.2M | $17.3M | $11.8M | $6.3M |
| 2012 | $10.6M | $8.3M | $15.6M | $10.3M | $7.1M |
| 2011 | $11M | $9.6M | $13M | $14.5M | $12.1M |
| 2021 | 990 | Data |
| 2020 | 990 | Data | PDF not yet published by IRS |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| $0 |
| $58.4K |
| $265.6K |
| Alexandra Moore | VP Of Development | 35 | $245.8K | $0 | $12.3K | $258.1K |
| Jill Pollander | VP Patient Services | 35 | $182.4K | $0 | $25.8K | $208.1K |
Alexandra Moore
VP Of Development
$258.1K
Hrs/Wk
35
Compensation
$245.8K
Related Orgs
$0
Other
$12.3K
Jill Pollander
VP Patient Services
$208.1K
Hrs/Wk
35
Compensation
$182.4K
Related Orgs
$0
Other
$25.8K
| $0 |
| $0 |
| $0 |
| $0 |
| Susan Berry Md | Director | 1 | $0 | $0 | $0 | $0 |
| Tom Kelly | Director | 1 | $0 | $0 | $0 | $0 |
Mike Porath
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Phillip Pearl Md
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Shafali Jeste Md
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Susan Berry Md
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Tom Kelly
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0