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National Organization for Rare Disorders Inc

EIN 13-3223946 · Danbury, CT

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthWeak45 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.

Income
$34.6 million
Spending
$40.4 million
Spent on programs
81%
Reserves
2.5 months of spending
Largest source of income
donations and private grants, 66%
Employees
116
Volunteers
1,308
Highest pay
$512,049, ceo

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Weak: 45 out of 100.

  • Reserves

    10 of 35

    Spendable reserves would cover 2.5 months of spending.

  • Debt

    20 of 20

    It owes 5% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 17% of income.

  • Income trend

    0 of 15

    Income fell 32% on the year before.

  • Spending floor

    15 of 15

    81% of spending went to programs and raising each dollar of donations cost 15 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100.

  • Independent board

    25 of 25

    15 of 16 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (6)
  1. $25.2 million spent. 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.
  2. $1.9 million spent. 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.
  3. $3.0 million spent. 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.
  4. $1.1 million spent. 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.
  5. $649,212 spent. 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.
  6. $920,169 spent. 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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since May 1989.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

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