Mission
NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.
Public Charity
NATIONAL ORGANIZATION FOR RARE DISORDERS INC
NATIONAL ORGANIZATION FOR RARE DISORDERS INC is a nonprofit organization categorized as Public Charity based in NORWELL, MA. Its most recent IRS filing (2025) reports revenue of $34.6M, expenses of $40.4M, total assets of $66.9M. Imperigo tracks 100 reported grant relationships connected to this organization totaling approximately $13.3M.
EIN: 133223946
NORWELL, MA
Latest filing: 2025
Total Revenue$34.6M
Total Expenses$40.4M
Total Assets$66.9M
Grant Records100
Funding Total$13.3M
Filing Years2021–2025
Where $100 goes at National Organization for Rare Disorders Inc
How National Organization for Rare Disorders Inc divides every $100 it spends, from its own Form 990 filings, averaged across 10 years.
$88
Programs
the work itself
$7
Management
running the organization
$5
Fundraising
raising the next dollar
Inside the $88 for programs
$68
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
$8
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
$5
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…
Plus 3 more programs. Cost per person served and the full program breakdown are on the full profile.
Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Sample Grants Received
TSC TRAVEL AND LODGING ASSISTANCE PROGRAM
$150,000
$100,000
GENERAL SUPPORT
$26,774
SUBAWARD
$1,319,385
TSC TRAVEL AND LODGING ASSISTANCE PROGRAM
$175,000
Showing up to 5 of 100 total records — full history available with membership.
Officers & Directors
DIRECTOR
Alan Miller Md Phd
VP OF DEVELOPMENT
Alexandra Moore
VICE CHAIR
Dennis Jackman
CHIEF MEDICAL & SCIENTIFIC OFFICER
Edward Neilan
VP PATIENT SERVICES
Jill Pollander
DIRECTOR (UNTIL 12/2025)
Jim Palma
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2025 | $34.6M | $40.4M | $66.9M |
| 2024 | $50.7M | $43.0M | $72.3M |
| 2023 | $66.4M | $52.8M | $65.2M |
| 2022 | $59.9M | $48.4M | $49.5M |
| 2021 | $43.2M | $57.7M | $37.9M |
Between 2021 and 2025, reported annual revenue declined from $43.2M to $34.6M (-20%), with total assets most recently reported at $66.9M.
Interactive year-over-year charts and full filing details available with membership.