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International Rett Syndrome Foundation

EIN 31-1682518 · Cincinnati, OH

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

LegitimacyPassesRegistration and standingFinancial healthFair68 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO ACCELERATE FULL SPECTRUM RESEARCH TO CURE RETT SYNDROME AND EMPOWER FAMILIES WITH INFORMATION, KNOWLEDGE, AND CONNECTIVITY.

Income
$4.3 million
Spending
$5.2 million
Spent on programs
80%
Reserves
7.2 months of spending
Largest source of income
donations and private grants, 90%
Employees
16
Volunteers
200
Highest pay
$178,813, chief executive officer - start 4/25

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

Fair: 68 out of 100. Higher than 27% of charities in its peer group (medical research, $1m to $10m).

  • Reserves

    28 of 35

    Spendable reserves would cover 7.2 months of spending.

  • Debt

    20 of 20

    It owes 7% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 22% of income.

  • Income trend

    5 of 15

    Income fell 11% on the year before.

  • Spending floor

    15 of 15

    80% 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. Higher than 64% of charities in its peer group (medical research, $1m to $10m).

  • Independent board

    25 of 25

    10 of 10 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 (2)
  1. $3.5 million spent. IRSF ADVANCES THE FULL SPECTRUM OF RETT SYNDROME RESEARCH - FROM BASIC SCIENCE TO CLINICAL DEVELOPMENT - WITH THE SINGULAR GOAL OF DELIVERING EFFECTIVE TREATMENTS AND, ULTIMATELY, A CURE. WE FUND TRANSLATIONAL RESEARCH GRANTS WORLDWIDE TO DEVELOP THE NEXT GENERATION OF RETT RESEARCH, CONVENE LEADING RESEARCHERS THROUGH OUR ANNUAL SCIENCE SYMPOSIA TO ACCELERATE DISCOVERY AND COLLABORATION, AND INVEST DIRECTLY IN THE THERAPEUTIC PIPELINE TO ACCELERATE TREATMENTS THAT WILL FUNDAMENTALLY CHANGE THE LIVES OF THOSE LIVING WITH RETT SYNDROME. THROUGH OUR CLINICAL RESEARCH NETWORK AND CENTERS OF EXCELLENCE, WE DRIVE THE DEVELOPMENT OF EVIDENCE-BASED CARE GUIDELINES, CONVENE KEY OPINION LEADERS, CONTRIBUTE TO A LONGITUDINAL DATA REGISTRY, AND BUILD UPON THE RETT NATURAL HISTORY STUDY, GENERATING THE REAL-WORLD EVIDENCE THAT INFORMS BOTH CARE STANDARDS AND REGULATORY PATHWAYS FOR NEW THERAPIES. THROUGH OUR NORTH AMERICAN CLINIC NETWORK, WE PROMOTE CONSISTENT, HIGH-QUALITY CARE BY MAKING EVIDENCE-BASED CLINICAL GUIDELINES ACCESSIBLE TO FAMILIES AND THE PROVIDERS WHO SERVE THEM.
  2. $619,501 spent. IRSF STANDS ALONGSIDE FAMILIES AT EVERY STAGE OF THE RETT SYNDROME JOURNEY - FROM DIAGNOSIS THROUGH ADULTHOOD. WE BUILD AND SUPPORT THE COMMUNITY IN NUMEROUS WAYS. OUR FAMILY EMPOWERMENT TEAM DELIVERS EXPERT-LED EDUCATIONAL PROGRAMMING THROUGH WEBINARS AND REGIONAL IN-PERSON EDUCATION DAYS AND RESOURCE DEVELOPMENT, ENSURING FAMILIES HAVE ACCESS TO THE LATEST CLINICAL AND RESEARCH INSIGHTS REGARDLESS OF WHERE THEY LIVE. OUR COMMUNITY ENGAGEMENT TEAM CONNECTS FAMILIES WITH IRSF AND WITH EACH OTHER TO ENSURE THEY HAVE AROUND THE CLOCK GUIDANCE, CONNECTION, AND SUPPORT. WE DEVELOP AND DISTRIBUTE EDUCATIONAL RESOURCES TAILORED FOR FAMILIES, CAREGIVERS, EDUCATORS, AND THERAPISTS. WE ENGAGE FEDERAL POLICYMAKERS TO KEEP RETT SYNDROME A NATIONAL RESEARCH FUNDING PRIORITY AND WORK DIRECTLY WITH INDUSTRY PARTNERS TO AMPLIFY THE PATIENT VOICE IN DRUG DEVELOPMENT TO ENSURE CLINICAL TRIAL DESIGN REFLECTS THE REALITIES OF LIVING WITH RETT.

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 March 2000.

    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.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.