Nonprofit · EIN 13-3223946
NATIONAL ORGANIZATION FOR RARE DISORDERS INC
Tax-exempt · DANBURY, CT 06810
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $34,577,196 | $40,401,111 | -$5,823,915 | $66,900,297 | $3,268,208 | $63,632,089 |
| December 31, 2024 | 990 | $50,676,798 | $43,034,462 | $7,642,336 | $72,321,740 | $3,745,803 | $68,575,937 |
| December 31, 2023 | 990 | $66,397,453 | $52,832,739 | $13,564,714 | $65,154,464 | $4,533,021 | $60,621,443 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $23,944,805
- of which government grants
- $1,172,580
- Membership dues
- $1,808,455
- Program service revenue
- $7,935,317
- Investment income
- $2,697,074
- Net gain from sales of assets
- $46,838
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $22,081,890
- Compensation of officers, directors and key employees
- $1,110,324
- Other salaries and wages
- $8,884,911
- Salaries, compensation and benefits (total)
- $12,244,648
- Professional fundraising fees
- $0
- Legal fees
- $465,611
- Accounting fees
- $82,022
- Occupancy
- $458,499
- Travel
- $77,846
- Depreciation
- $1,126,877
- Program services (functional)
- $32,777,209
- Management and general (functional)
- $3,918,660
- Fundraising (functional)
- $3,705,242
Balance sheet and other
- Total assets, start of year
- $72,321,740
- Total assets, end of year
- $66,900,297
- Total liabilities, end of year
- $3,268,208
- Net assets, end of year
- $63,632,089
- Land, buildings and equipment
- $1,895,499
- Publicly traded securities
- $47,633,554
- Net assets without donor restrictions
- $10,464,343
- Net assets with donor restrictions
- $53,167,746
- Gross receipts
- $43,838,797
- Employees
- 116
- Volunteers
- 1,308
- Year formed
- 1983
- State of legal domicile
- NY
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| PAMELA GAVIN | CEO Trustee or director, Officer | 35 | $479,961 | $32,088 |
| EDWARD NEILAN | CHIEF MEDICAL & SCIENTIFIC OFFICER Highest-paid employee | 35 | $270,662 | $60,560 |
| KELLEEN ESPERIAS | CHIEF STRATEGY & OPERATIONS OFFICER Officer | 35 | $294,239 | $29,613 |
| PRASHANT GOEL | VP INFORMATION TECHNOLOGY Highest-paid employee | 35 | $293,256 | $15,368 |
| ALEXANDRA MOORE | VP OF DEVELOPMENT Highest-paid employee | 35 | $254,340 | $12,713 |
| NEETA KOTECHA | VP & CFO Officer | 35 | $186,375 | $38,387 |
| TRACEY SIKORA | VP OF RESEARCH & CLINICAL PROGRAMS Highest-paid employee | 35 | $194,233 | $24,588 |
| JILL POLLANDER | VP PATIENT SERVICES Highest-paid employee | 35 | $187,802 | $24,142 |
| PETER SALTONSTALL | SENIOR ADVISOR & CEO EMERITUS Officer | 17 | $47,303 | $2,358 |
| KATHLEEN HOLCOMBE | CHAIR Trustee or director, Officer | 10 | $0 | $0 |
| DENNIS JACKMAN | VICE CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| MARK SKINNER | TREASURER Trustee or director, Officer | 5 | $0 | $0 |
| LORNA WEIR | SECRETARY Trustee or director, Officer | 5 | $0 | $0 |
| KIM ISENBERG | DIRECTOR Trustee or director | 1 | $0 | $0 |
| PAUL LYONS | DIRECTOR Trustee or director | 1 | $0 | $0 |
9 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| SUSAN BERRY MD | DIRECTOR Trustee or director | 1 | $0 |
| SHAFALI JESTE MD | DIRECTOR (UNTIL 12/2025) Trustee or director | 1 | $0 |
| PHILIP PEARL MD | DIRECTOR (UNTIL 12/2025) Trustee or director | 1 | $0 |
| MIKE PORATH | DIRECTOR Trustee or director | 1 | $0 |
| TOM KELLY | DIRECTOR Trustee or director | 1 | $0 |
| STEVEN MAH PHD | DIRECTOR Trustee or director | 1 | $0 |
| ALAN MILLER MD PHD | DIRECTOR Trustee or director | 1 | $0 |
| SHELDON SCHUSTER PHD | DIRECTOR Trustee or director | 1 | $0 |
| JIM PALMA | DIRECTOR (UNTIL 12/2025) Trustee or director | 1 | $0 |
990 for the year ended December 31, 2024: 21 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| PAMELA GAVIN | EVP (UNTIL 5/24)/CEO (AS OF 5/24) Officer | 35 | $441,759 | $33,733 |
| PETER SALTONSTALL | CEO (UNTIL 5/24)/CEO EMERITUS (AS OF 5/24) Trustee or director, Officer | 35 | $374,441 | $24,515 |
| EDWARD NEILAN | CHIEF MEDICAL & SCIENTIFIC OFFICER Highest-paid employee | 35 | $270,662 | $61,615 |
| PRASHANT GOEL | VP INFORMATION TECHNOLOGY Highest-paid employee | 35 | $283,442 | $14,622 |
| PATRICK COLLINS | VP COMMUNITY & CORPORATE AFFAIRS Highest-paid employee | 35 | $207,141 | $58,445 |
| ALEXANDRA MOORE | VP OF DEVELOPMENT Highest-paid employee | 35 | $245,775 | $12,284 |
| NEETA KOTECHA | VP & CFO Officer | 35 | $179,637 | $42,329 |
| JILL POLLANDER | VP PATIENT SERVICES Highest-paid employee | 35 | $182,382 | $25,766 |
| KELLEEN ESPERIAS | CHIEF STRATEGY & OPERATIONS OFFICER Officer | 35 | $71,108 | $6,327 |
| KATHLEEN HOLCOMBE | CHAIR Trustee or director, Officer | 10 | $0 | $0 |
| SHELDON SCHUSTER PHD | VICE CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| LEON EIDELMAN | TREASURER (UNTIL 12/24) Trustee or director, Officer | 5 | $0 | $0 |
| JIM PALMA | SECRETARY Trustee or director, Officer | 5 | $0 | $0 |
| DENNIS JACKMAN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MARK SKINNER | DIRECTOR Trustee or director | 1 | $0 | $0 |
| SUSAN BERRY MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| SHAFALI JESTE MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| PHILLIP PEARL MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MIKE PORATH | DIRECTOR Trustee or director | 1 | $0 | $0 |
| TOM KELLY | DIRECTOR Trustee or director | 1 | $0 | $0 |
| LORNA WEIR | DIRECTOR Trustee or director | 1 | $0 | $0 |
990 for the year ended December 31, 2023: 21 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| PETER SALTONSTALL | PRESIDENT/CEO Trustee or director, Officer | 35 | $496,804 | $26,404 |
| PAMELA GAVIN | EXECUTIVE VICE PRESIDENT Officer | 35 | $390,823 | $31,910 |
| EDWARD NEILAN | CHIEF MEDICAL & SCIENTIFIC OFFICER Highest-paid employee | 35 | $270,662 | $58,975 |
| PRASHANT GOEL | VP INFORMATION TECHNOLOGY Highest-paid employee | 35 | $282,667 | $14,531 |
| ALEXA MOORE | VP OF DEVELOPMENT Highest-paid employee | 35 | $235,028 | $11,747 |
| LISA SARFATY | VP COMMUNITY ENGAGEMENT Highest-paid employee | 35 | $173,427 | $54,480 |
| NEETA KOTECHA | VP FINANCE Officer | 35 | $177,102 | $38,575 |
| JILL POLLANDER | VP PATIENT SERVICES Highest-paid employee | 35 | $179,475 | $23,972 |
| KATHLEEN HOLCOMBE | CHAIR Trustee or director, Officer | 10 | $0 | $0 |
| DENNIS JACKMAN | VICE CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| LEON EIDELMAN | TREASURER Trustee or director, Officer | 5 | $0 | $0 |
| JIM PALMA | SECRETARY Trustee or director, Officer | 1 | $0 | $0 |
| MARK SKINNER | DIRECTOR Trustee or director | 5 | $0 | $0 |
| SUSAN BERRY MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| SHAFALI JESTE MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| PHILLIP PEARL MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MIKE PORATH | DIRECTOR Trustee or director | 1 | $0 | $0 |
| TOM KELLY | DIRECTOR (AS OF 5/4/23) Trustee or director | 1 | $0 | $0 |
| SHELDON SCHUSTER PHD | DIRECTOR (AS OF 5/4/23) Trustee or director | 1 | $0 | $0 |
| LORNA WEIR | DIRECTOR (AS OF 5/4/23) Trustee or director | 1 | $0 | $0 |
| STEVEN GROSSMAN | DIRECTOR (UNTIL 1/31/23) Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 7 KENOSIA AVENUE, DANBURY, CT 06810-7395
- Principal officer (990 for 2025)
- NEETA KOTECHA, 120 LONGWATER DRIVE 105, NORWELL, MA 02061
- Signed the 990
- NEETA KOTECHA, VP AND CHIEF FINANCIAL OFFICER
- Phone
- (617) 249-7300
- Website
- WWW.RAREDISEASES.ORG
- Return prepared by
- AAFCPAS INC
Mission
NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.
Program accomplishments
- NORD'S PATIENT ASSISTANCE PROGRAMS PROVIDE ELIGIBLE INDIVIDUALS WITH FINANCIAL ASSISTANCE TO SUPPORT THE BROAD RANGE OF CARE AND TREATMENT NEEDS ASSOCIATED WITH MANAGING A RARE DISEASE. EACH DISEASE-SPECIFIC PROGRAM IS DESIGNED TO ADDRESS THE NUANCES OF THE INDIVIDUAL CONDITION AND THE UNIQUE NEEDS OF ITS PATIENT COMMUNITY. ASSISTANCE MAY INCLUDE SUPPORT FOR HEALTH INSURANCE PREMIUMS, COPAYMENTS, AND COINSURANCE, AS WELL AS CERTAIN COVERED OUT-OF-POCKET MEDICAL EXPENSES. NORD'S APPROACH ENSURES THAT ELIGIBLE INDIVIDUALS, WHETHER COMMERCIALLY INSURED, PUBLICLY INSURED, UNDERINSURED, OR UNINSURED, RECEIVE THE FINANCIAL SUPPORT NECESSARY TO ACCESS THE CARE AND TREATMENT PRESCRIBED BY THEIR HEALTH CARE PROVIDER(S). IN 2025, NORD'S PATIENT ASSISTANCE PROGRAMS PROVIDED FINANCIAL ASSISTANCE TO 6,880 INDIVIDUALS, INCLUDING 6,602 INDIVIDUALS SUPPORTED THROUGH OUR PAP AND 278 INDIVIDUALS WHO RECEIVED TRAVEL AND LODGING ASSISTANCE TO PARTICIPATE IN CLINICAL TRIALS.Expenses $25,200,680 · grants $22,081,890 · revenue $4,936,057
- NORD'S EDUCATIONAL INITIATIVES STRIVE TO EMPOWER PATIENTS AND THEIR FAMILIES, INFORM AND EDUCATE STUDENTS ACROSS DISCIPLINES FROM HIGH SCHOOL THROUGH GRADUATE SCHOOL, AND SUPPORT THE VITALLY IMPORTANT WORK OF PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS IN IMPROVING THE RECOGNITION OF SYMPTOMS OF RARE DISEASE AND EARLY, ACCURATE DIAGNOSIS AS WELL AS IMPROVING CLINICIAN KNOWLEDGE AND COMPETENCE IN TREATING RARE DISEASES. THIS IS DONE THROUGH THE DEVELOPMENT OF NORD'S RARE DISEASE DATABASE OF MORE THAN 1,480 COMPREHENSIVE EXPERT-WRITTEN REPORTS ON SPECIFIC RARE DISORDERS, THE DELIVERY OF RARE DISEASE VIDEOS AND WEBINARS, AND THROUGH ROBUST EDUCATIONAL PROGRAMMING WITH NORD'S CME PROGRAM AND AT THE NORD RARE DISEASES AND ORPHAN PRODUCTS BREAKTHROUGH SUMMIT. IN 2025, 759 PEOPLE ATTENDED THE NORD SUMMIT IN PERSON, AND 60 PEOPLE REGISTERED TO ATTEND VIRTUALLY. ALSO, IN 2025, THERE WERE OVER 15 MILLION VISITORS TO NORD'S RARE DISEASE DATABASE.Expenses $1,921,195 · revenue $2,046,711
- IN 2025, NORD CONTINUED TO ADVANCE THE IAMRARE NATURAL HISTORY AND REGISTRY PLATFORM TO STRENGTHEN RARE DISEASE RESEARCH AND IMPROVE THE PATIENT EXPERIENCE IN SUPPORT OF THERAPEUTIC DEVELOPMENT. MAJOR PLATFORM ENHANCEMENTS INCLUDED THE LAUNCH OF A REDESIGNED UI TO STREAMLINE NAVIGATION AND IMPROVE CROSS-BROWSER CONSISTENCY, AND THE RELEASE OF THE IAMRARE MOBILE APP WITH FEATURES SUCH AS PUSH NOTIFICATIONS FOR SURVEY REMINDERS AND DEVICE-LEVEL ACCESSIBILITY CONTROLS. AS OF DECEMBER 2025, THERE WERE 22,142 CONSENTED PARTICIPANTS ACROSS 51 REGISTRIES. IN ADDITION, DURING 2025, 10 NEW RARE DISEASE REGISTRIES WERE LAUNCHED, REPRESENTING THE LARGEST NUMBER INITIATED IN A SINGLE YEAR, AND THE RESEARCH TEAM WAS SUPPORTING THE DEVELOPMENT OF 24 ADDITIONAL REGISTRIES.Expenses $3,000,676 · revenue $952,549
- THE NATIONAL ORGANIZATION FOR RARE DISORDERS ENGAGES IN ADVOCACY EFFORTS THAT SERVE AS A LIAISON BETWEEN THE RARE DISEASE COMMUNITY AND THE ORGANIZATIONS AND INSTITUTIONS THAT HAVE A DIRECT IMPACT ON THE LIVES OF THE APPROXIMATELY 30 MILLION AMERICANS LIVING WITH RARE DISEASES. NORD WORKS WITH A WIDE RANGE OF STAKEHOLDERS, INCLUDING STATE AND FEDERAL AGENCIES AND LEGISLATORS, NONPROFIT ORGANIZATIONS, AND PRIVATE SECTOR PARTNERS TO RAISE AWARENESS OF THE NEEDS OF RARE DISEASE PATIENTS AND TO ADVANCE POLICIES AND INITIATIVES THAT IMPROVE CARE, TREATMENT, AND SUPPORT FOR THE RARE DISEASE COMMUNITY.Expenses $1,085,277
- THE NATIONAL ORGANIZATION FOR RARE DISORDERS IS THE LEADING RARE DISEASE UMBRELLA ORGANIZATION IN THE UNITED STATES, PROVIDING ITS MEMBER ORGANIZATIONS WITH SUPPORT IN ADVOCACY, EDUCATION, RESEARCH, PROFESSIONAL DEVELOPMENT, ORGANIZATIONAL LEADERSHIP, AND COMMUNICATIONS. THROUGH THESE PROGRAMS AND SERVICES, NORD EQUIPS LEADERS OF PATIENT ORGANIZATIONS WITH THE TOOLS AND RESOURCES NEEDED TO REMAIN INFORMED, CONNECTED, AND EFFECTIVE AS THEY ESTABLISH, GROW, AND STRENGTHEN THEIR ORGANIZATIONS. AS OF DECEMBER 2025, NORD SUPPORTED 360 MEMBER PATIENT ORGANIZATIONS.Expenses $649,212
- THE NORD RARE DISEASE CENTERS OF EXCELLENCE PROGRAM IDENTIFIES AND COLLABORATES WITH A NETWORK OF U.S. MEDICAL INSTITUTIONS THAT HAVE EXCEPTIONAL CLINICAL AND RESEARCH PROGRAMS SERVING PATIENTS WITH RARE DISEASES. THESE INSTITUTIONS WORK IN PARTNERSHIP WITH NORD, WITH ONE ANOTHER, AND WITH THEIR LOCAL COMMUNITIES OF PHYSICIANS, CAREGIVERS, AND PATIENTS TO SHARE EXPERT KNOWLEDGE, DEFINE STANDARDS OF PRACTICE FOR RARE DISEASES, ACCELERATE DIAGNOSIS, AND IMPROVE PATIENT CARE, TREATMENT, AND RESEARCH. THROUGH THIS COLLABORATIVE NETWORK, THE PROGRAM HELPS ADVANCE BEST PRACTICES AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH RARE DISEASES. AS OF DECEMBER 2025, THERE WERE 46 DESIGNATED RARE DISEASE CENTERS OF EXCELLENCE.Expenses $920,169
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 13-3223946
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1989
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Assets (IRS master file)
- $66,900,297
- Income (IRS master file)
- $43,838,797
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $34,577,196 | $40,401,111 | $66,900,297 | XML |
| 990 | December 2024 | $50,676,798 | $43,034,462 | $72,321,740 | XML |
| 990 | December 2023 | $66,397,453 | $52,832,739 | $65,154,464 | XML |
| 990 | December 2022 | $59,872,383 | $48,420,739 | $49,542,120 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 13-3223946).
Questions about NATIONAL ORGANIZATION FOR RARE DISORDERS INC
- What is the EIN of NATIONAL ORGANIZATION FOR RARE DISORDERS INC?
- The employer identification number (EIN) of NATIONAL ORGANIZATION FOR RARE DISORDERS INC is 13-3223946.
- Is NATIONAL ORGANIZATION FOR RARE DISORDERS INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1989.
- Are donations to NATIONAL ORGANIZATION FOR RARE DISORDERS INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NATIONAL ORGANIZATION FOR RARE DISORDERS INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of NATIONAL ORGANIZATION FOR RARE DISORDERS INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NATIONAL ORGANIZATION FOR RARE DISORDERS INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of NATIONAL ORGANIZATION FOR RARE DISORDERS INC?
- The 990 for the year ended December 31, 2025 names NEETA KOTECHA.
- Who are the officers and directors of NATIONAL ORGANIZATION FOR RARE DISORDERS INC?
- The 990 for the year ended December 31, 2025 lists 24 people; 9 received compensation from the organization, the highest $479,961 (PAMELA GAVIN, CEO).
- How much revenue does NATIONAL ORGANIZATION FOR RARE DISORDERS INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $34,577,196, expenses of $40,401,111 and total assets of $66,900,297 at year end.
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