National Organization for Rare Disorders
National Organization for Rare Disorders reported $34.6 million in revenue and $40.4 million in expenses for calendar year 2025. Of every $100 it spent, $81.13 went to program services, $9.70 to management and general costs and $9.17 to fundraising. Its largest source of revenue was contributions and grants: 69.3% of the total. The highest compensation it reported for one person was $512,049 (CEO). 32 people received more than $100,000 in reportable compensation. Revenue fell 34% between 2019 and 2025. Source: Form 990, 2025.
Where $100 of spending went
Calendar year 2025 · Form 990, Part IX, line 25 · total expenses $40MFor context, the median across 2,433 covered unclassified charities: $88.27 programs, $11.68 management, $0.05 fundraising (medians computed separately, so they may not sum to $100).
Where $100 of revenue came from
Calendar year 2025 · Form 990, Part VIII · total revenue $35MThe 990 scorecard · same measures for every charity, no grades
| Measure | 2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 81.1% | 86.7% |
| Management & general Part IX 25(C) ÷ 25(A) | 9.7% | 11.5% |
| Fundraising Part IX 25(D) ÷ 25(A) | 9.2% | 0.0% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.15 | $0.01 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 69.3% | 29.9% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 3.4% | 3.8% |
| Program service revenue share Part VIII 2g ÷ 12 | 22.9% | 58.9% |
| Highest reported compensation Part VII-A, columns D–F | $512,049 | $301,601 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 1.27% | 1.38% |
| People paid over $100,000 Part VII, line 2 | 32 | 6 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 18.9 | 6.8 |
| Independent voting board members Part VI 1a–1b | 15 of 16 | 100.0% |
A median is context, not a target: hospitals, universities, food banks and grantmakers spend in very different ways. What these measures can and can't tell you.
What the money paid for, in its own words
2025 · Form 990, Part III · the three largest programs by expenseNord'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…
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…
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…
Highest reported compensation
2025 · Form 990, Part VII, Section A · roles as filed; names are in the filing, not here| Role | From this org | From related orgs | Other | Total |
|---|---|---|---|---|
| CEO Director/trustee, officer, 35.00 hrs/week | $479,961 | $0 | $32,088 | $512,049 |
| CHIEF MEDICAL & SCIENTIFIC OFFICER Highest compensated employee, 35.00 hrs/week | $270,662 | $0 | $60,560 | $331,222 |
| CHIEF STRATEGY & OPERATIONS OFFICER Officer, 35.00 hrs/week | $294,239 | $0 | $29,613 | $323,852 |
| VP INFORMATION TECHNOLOGY Highest compensated employee, 35.00 hrs/week | $293,256 | $0 | $15,368 | $308,624 |
| VP OF DEVELOPMENT Highest compensated employee, 35.00 hrs/week | $254,340 | $0 | $12,713 | $267,053 |
| VP & CFO Officer, 35.00 hrs/week | $186,375 | $0 | $38,387 | $224,762 |
| VP OF RESEARCH & CLINICAL PROGRAMS Highest compensated employee, 35.00 hrs/week | $194,233 | $0 | $24,588 | $218,821 |
| VP PATIENT SERVICES Highest compensated employee, 35.00 hrs/week | $187,802 | $0 | $24,142 | $211,944 |
32 people received more than $100,000 in reportable compensation from National Organization for Rare Disorders (Part VII, line 2). Compensation of current officers, directors and key employees totaled $1.1M (Part IX, line 5).
7 years of filings
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
2025 · the organization's own yes/no answers; explanations, if any, are in Schedule O of the filing · what each means- Voting board members, and how many are independent Part VI, lines 1a–1b16 · 15 independent
- Audited financial statements Part XII 2bYes
- Conflict-of-interest policy Part VI 12aYes
- Whistleblower policy Part VI 13Yes
- Document retention policy Part VI 14Yes
- Independent process for top executive pay Part VI 15aYes
- Board given the 990 before filing Part VI 11aYes
- Family or business ties among insiders Part VI 2No
- Aware of a significant diversion of assets Part VI 5No
- Excess benefit transaction with an insider Part IV 25aNo
- Loans to or from insiders outstanding Part IV 26No
- Lobbying, or a 501(h) election in effect Part IV 4Yes
- Over $15,000 of professional fundraising services Part IV 18No
- Over $10,000 of activity outside the U.S. Part IV 14bYes
- Employees Part I, line 5116
- Volunteers Part I, line 61,308
Largest outside contractors
2025 · Form 990, Part VII, Section B · businesses only| FUTURE DMZ FUTURE LIMO Ground transportation/patient service | $318,676 |
| MANATT PHELPS AND PHILLIPS LLP Legal services | $195,000 |
| ZUCKERMAN SPAEDER LLP Legal services | $175,494 |
Individuals listed as contractors are left out. 3 contractors were paid more than $100,000 in all.
Private foundation grants it received
19 private foundations reported grants to National Organization for Rare Disorders totaling $414K on their tax year 2023 Form 990-PF returns. See which foundations, on WHOFUNDS.
Source: WHOFUNDS open grant graph, matched from Form 990-PF Part XV.
Correct a figure or respond
Every number above is copied from National Organization for Rare Disorders's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for National Organization for Rare Disorders, you can publish a response that is linked from this page.
Share or embed this breakdown
Of every $100 National Organization for Rare Disorders spent in 2025, $81.13 went to programs. The full breakdown, from its IRS Form 990:
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Similar-sized charities in this cause
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All unclassified charities · Largest charities in Massachusetts
Questions people ask
How much of National Organization for Rare Disorders's spending goes to programs?
In calendar year 2025, National Organization for Rare Disorders reported that 81.1% of its $40.4 million in expenses went to program services, 9.7% to management and general and 9.2% to fundraising (Form 990, Part IX).
How much does National Organization for Rare Disorders pay its top executive?
The largest total compensation National Organization for Rare Disorders reported for one person in calendar year 2025 was $512,049, for the role of CEO (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does National Organization for Rare Disorders get its money?
Of $34.6 million in revenue in calendar year 2025, 69.3% came from contributions and grants (including 3.4% from government grants) and 22.9% from program service revenue (Form 990, Part VIII).
Is National Organization for Rare Disorders a registered charity?
The IRS lists EIN 13-3223946 as a 501(c)(3) organization (publicly supported organization (170(b)(1)(a)(vi))), and its records show contributions as tax-deductible. Form 990 filings on record here cover tax years 2019, 2020, 2021, 2022, 2023, 2024, 2025. A filing shows what the organization reported; it doesn't by itself show whether a program works.
Sources
- 2025: Form 990 for calendar year 2025, object 202621489349300522 · read the filing · XML
- 2024: Form 990 for calendar year 2024, object 202521609349300767 · read the filing
- 2023: Form 990 for calendar year 2023, object 202421529349300917 · read the filing
- 2022: Form 990 for calendar year 2022, object 202341319349302394 · read the filing
- 2021: Form 990 for calendar year 2021, object 202202719349300210 · read the filing
- 2020: Form 990 for calendar year 2020, object 202121979349300507 · read the filing
- 2019: Form 990 for calendar year 2019, object 202032179349300718 · read the filing
All filings for EIN 13-3223946: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.