National Organization For Rare Disorders Inc
501(c)(3) Donations tax-deductible
83% goes to programs $8 to raise $100 Strong reserves Growing revenue
National Organization For Rare Disorders Inc is a 501(c)(3) organization based in Danbury, Connecticut, registered in 1989, with $50,676,798 in FY2024 revenue. CharityIndex grades it A, and it directs about 83% of spending to programs.
7 Kenosia Avenue, Danbury, CT, 06810 EIN 13-3223946 Since 1989
Revenue (FY2024)
$50.7M
▼ 23.7% vs prior year
Expenses (FY2024)
$43.0M
Net assets
$68.6M
Employees
124
CharityIndex rating
One independent A+ to F grade from four published criteria, each scored separately from IRS filings and combined by weight.
A
AProgram efficiency40% of the rating83% to programs · $8 to raise $100
Measures how much of every dollar spent actually reaches programs, plus what it costs to raise $100 of donations. The worse of the two measures sets the letter (85%+ to programs is an A; under $15 to raise $100 is an A), averaged over the three most recent filings. For National Organization For Rare Disorders Inc: 83% to programs · $8 to raise $100 earns a A on this criterion. See the exact thresholds →
AFinancial health25% of the rating19 mo reserves · +15% margin
Measures whether the organization is built to last: how many months its reserves would cover expenses (3+ months earns an A-range score, but hoarding 5+ years of budget is capped) and whether it runs a surplus or a deficit. For National Organization For Rare Disorders Inc: 19 mo reserves · +15% margin earns a A on this criterion. See the exact thresholds →
A+Governance25% of the rating6 of 6 checks met
Checks how the organization is run, from its own Form 990: an independent board majority, a board of five or more, conflict-of-interest, whistleblower and document-retention policies, and independently audited financials. The share of disclosed checks that pass sets the letter. For National Organization For Rare Disorders Inc: 6 of 6 checks met earns a A+ on this criterion. See the exact thresholds →
A+Transparency10% of the rating5 of 5 disclosure signals
Counts five disclosure signals: a recent filing, a mission statement, program descriptions, a listed website, and the full expense breakdown. More disclosure, better letter. For National Organization For Rare Disorders Inc: 5 of 5 disclosure signals earns a A+ on this criterion. See the exact thresholds →
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Mission
Nord strives to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy.
What they do
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, the delivery of rare disease videos and webinars, and through robust educational programming with nord's cme program and at the living rare, living stronger nord patient and family forum and the nord rare diseases and orphan products summit. in 2024, 794 people attended the nord summit in person, and 64 people registered for virtual streaming of the meeting. also, in 2024, there were over 15 million visitors to nord's rare disease database.
In 2024, nord continued to develop the iamrare natural history/registry platform and program to help researchers better understand the patient experience and promote the development of innovative, safe, and effective therapies. new iamrare platform features added this year included enhancements to the user experience and support for additional languages (spanish and french). as of 12-31-2024, there were 17,591 consented participants across 44 registries representing more than 140 rare diseases. in addition, as of 12-31-2024, the research team was supporting the development of 30 new rare disease registries.
Nord's advocacy efforts are focused on serving as a liaison between the rare disease community and the various organizations and institutions that have a direct impact on the lives of the 30 million americans living with rare diseases. nord engages all types of organziations, including state and federal agencies and legislators, other non-profit organizations, and for-profit organizations to help raise awareness around the needs of rare disease patients and to collectively contribute to realizing solutions that can positively impact the diverse rare disease community.
Contact & location
- Address
- 7 Kenosia Avenue, Danbury, CT, 06810
- City
- Danbury
- State
- Connecticut
- Category
- —
- Subcategory
- —
- Phone
- …
- Website
- …
Financial trends
Revenue grew from $16.5M (FY2013) to $50.7M (FY2024) across 12 reported years.
Financial snapshot
Financial health & position (FY2024)
Liabilities $3.7MNet assets $68.6M
Operating margin
15.1%
Revenue exceeded expenses in the latest fiscal year.
Total assets
$72.3M
Total liabilities
$3.7M
Net assets
$68.6M
Salaries & benefits
$12.6M
29% of expenses
Board members
12
11 independent
Financials by year
| Fiscal year | Revenue | Expenses | Net assets | Total assets | Form |
|---|---|---|---|---|---|
| 2024 | $50,676,798▼23.7% | $43,034,462▼18.5% | $68,575,937▲13.1% | $72,321,740▲11.0% | 990 |
| 2023 | $66,397,453▲10.9% | $52,832,739▲9.1% | $60,621,443▲30.9% | $65,154,464▲31.5% | 990 |
| 2022 | $59,872,383▲38.6% | $48,420,739▼16.1% | $46,304,541▲32.5% | $49,542,120▲30.8% | 990 |
| 2021 | $43,188,172▲0.8% | $57,720,517▲9.5% | $34,941,697▼29.5% | $37,875,246▼28.2% | 990 |
| 2020 | $42,843,360▼18.3% | $52,712,119▲26.1% | $49,567,652▼16.6% | $52,774,540▼14.5% | 990 |
| 2019 | $52,413,377▲11.2% | $41,789,694▲22.6% | $59,419,323▲22.0% | $61,751,096▲21.5% | 990 |
| 2018 | $47,123,099▼2.1% | $34,074,818▲3.3% | $48,710,640▲36.6% | $50,838,028▲32.8% | 990 |
| 2017 | $48,131,131▲25.7% | $32,990,742▲14.7% | $35,662,359▲73.8% | $38,279,763▲64.5% | 990 |
| 2016 | $38,294,476▲87.3% | $28,761,844▲47.1% | $20,521,970▲86.8% | $23,264,856▲69.2% | 990 |
| 2015 | $20,448,445▼25.8% | $19,549,729▼15.8% | $10,984,239▲8.8% | $13,751,505▼10.0% | 990 |
| 2014 | $27,567,898▲66.8% | $23,227,752▲34.4% | $10,100,343▲59.5% | $15,275,953▲30.0% | 990 |
| 2013 | $16,524,222 | $17,285,806▲10.7% | $6,332,653▼10.8% | $11,755,018▲14.0% | 990 |
| 2012 | — | $15,621,934▲20.1% | $7,099,122▼41.5% | $10,314,640▼28.6% | 990 |
| 2011 | — | $13,006,380▼0.3% | $12,140,619▼18.9% | $14,450,108▼13.0% | 990 |
| 2010 | — | $13,042,768 | $14,972,436 | $16,600,875 | 990 |
Original Form 990 PDFs (the Form column) are served by ProPublica Nonprofit Explorer, as filed with the IRS. Create a free account to download the CSV report.
Leadership & compensation (FY2024)
Highest-paid: Pamela Gavin — $441,759 (1.03% of total expenses)
| Name | Title | Hours/week | Compensation |
|---|---|---|---|
| Pamela Gavin | Evp (until 5/24)/ceo (as of 5/24) | 35 | $441,759 |
| Peter Saltonstall | Ceo (until 5/24)/ceo Emeritus (as of 5/24) | 35 | $374,441 |
| Prashant Goel | Vp Information Technology | 35 | $283,442 |
| Edward Neilan | Chief Medical & Scientific Officer | 35 | $270,662 |
| Alexandra Moore | Vp of Development | 35 | $245,775 |
| Patrick Collins | Vp Community & Corporate Affairs | 35 | $207,141 |
| Jill Pollander | Vp Patient Services | 35 | $182,382 |
| Neeta Kotecha | Vp & Cfo | 35 | $179,637 |
| Kelleen Esperias | Chief Strategy & Operations Officer | 35 | $71,108 |
| Dennis Jackman | Director | 1 | — |
| Jim Palma | Secretary | 5 | — |
| Kathleen Holcombe | Chair | 10 | — |
| Leon Eidelman | Treasurer (until 12/24) | 5 | — |
| Lorna Weir | Director | 1 | — |
| Mark Skinner | Director | 1 | — |
| Mike Porath | Director | 1 | — |
| Phillip Pearl Md | Director | 1 | — |
| Shafali Jeste Md | Director | 1 | — |
| Sheldon Schuster Phd | Vice Chair | 5 | — |
| Susan Berry Md | Director | 1 | — |
Top vendors & contractors (FY2024)
| Contractor | Services | Paid |
|---|---|---|
| Future Dmz Future Limo | Patient Service | $332,640 |
| Zuckerman Spaeder LLP | Legal Services | $107,332 |
| Kendall Square Policy Strategiesllc | Consulting Services | $103,087 |
Grants received · $2.5M total
58 grants to National Organization For Rare Disorders Inc totaling $2.5M, reported by foundations on their Schedule I filings — showing the 15 most recent.
Grants made · $40K in FY2024
2 grants totaling $40K in FY2024. All grants made by National Organization For Rare Disorders Inc →
| Recipient | Purpose | Amount |
|---|---|---|
| Drexel University | Final payment for acpmp research grant nord id 15005 | $25,000 |
| The Childrens Hospital of Philadelphia | First payment of 2 for mmihs research | $15,000 |
Frequently asked questions
- Is National Organization For Rare Disorders Inc a legitimate nonprofit?
- Yes. National Organization For Rare Disorders Inc is a 501(c)(3) organization registered with the U.S. Internal Revenue Service under EIN 13-3223946, based in Danbury, Connecticut. Donations are tax-deductible.
- What is National Organization For Rare Disorders Inc's EIN?
- National Organization For Rare Disorders Inc's Employer Identification Number (EIN) is 13-3223946.
- How much revenue does National Organization For Rare Disorders Inc report?
- National Organization For Rare Disorders Inc reported $50,676,798 in total revenue on its fiscal year 2024 IRS Form 990 filing.
- How much of National Organization For Rare Disorders Inc's spending goes to programs?
- National Organization For Rare Disorders Inc spends about 83% of its total expenses on programs, based on its latest IRS Form 990.
- What financial grade does National Organization For Rare Disorders Inc have?
- CharityIndex grades National Organization For Rare Disorders Inc A, based on program efficiency and fundraising cost.
- How much does National Organization For Rare Disorders Inc's highest-paid employee make?
- The highest reported compensation on National Organization For Rare Disorders Inc's latest Form 990 is $441,759, paid to Pamela Gavin (Evp (until 5/24)/ceo (as of 5/24)).
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Data for National Organization For Rare Disorders Inc (EIN 13-3223946) comes from the IRS Business Master File and e-filed Form 990 returns, via CharityIndex. Figures reflect what the organization reported to the IRS for each fiscal year.