Mission
The International Rett Syndrome Foundation (IRSF) is dedicated to creating a world without Rett syndrome through accelerating research for treatments and cures, while providing support and resources to families affected by the disorder.
Basic Information
Tax-Exempt
Founded in
1999
EIN
31-1682518
Total Assets
$6.439 million
UN Sustainable Development Goals Supported
This organization contributes to the following United Nations Sustainable Development Goals. See the SDG page for more information.
Showing 3 of 4 goals
At a Glance
Accelerating Research
Advancing disease-modifying and potentially curative research for Rett syndrome.
Support for Families
Providing families with the latest medical information and support resources.
Get Involved
Learn how you can help accelerate research and support families impacted by Rett syndrome.
Impact Stats
1
Research Initiatives Funded
Gene Discovery
Funded the discovery of the gene that causes Rett syndrome (MECP2).
1
Clinical Trials Initiated
FDA-Approved Treatment
Funded early-phase clinical trials of trofinetide, the first-ever FDA-approved treatment for Rett.
18
Centers Established
Centers of Excellence
Designated 18 Rett Syndrome Centers of Excellence for best-in-class care.
Past Events
ASCEND 2024 Rett Syndrome National Summit
2024-06-18
Annual scientific meeting focused on advancing research and treatment for Rett syndrome.
FDA CBER Patient Listening Meeting
2024-12-04
Listening meeting to discuss patient perspectives on gene therapy enrollment.
Upcoming Events
My Rett 'Ally Hour'
2024-11-20
An interactive webinar to learn about the My Rett Ally app and its features.
Learn MoreEnchanted Dreams Fantasy Gala for Rett
2025-05-17
A gala event to raise funds and awareness for Rett syndrome.
Our Programs
Rett Research Ready
A program to facilitate participation in clinical trials for researchers and families.
Learn MoreVolunteer Opportunities
Impact Reports
MIP Score (Beta)
The MIP Score is in beta! We'd love any feedback you may have.
The MIP Score and it's methodology is purely used as a way to visualize how a nonprofits public financial data compares against others. It doesn't reflect the unique circumstances and impact that a nonprofit has.The MIP Score should never be used to say one charity is better than another.
Overall Score
71
54
/100
Program Expense Ratio
84.69%
16
/20
Program Revenue Growth
123.96K%
2
/20
Leverage Ratio
0.3064
12
/20
Working Capital Ratio
0.8128
10
/20
Fundraising Efficiency
0.6661
14
/20
Latest Filing Data: Form 990
Fiscal Year:2022
Source:Source: Self-reported by organization
Financial Details
Revenue
| Category | Amount | Percentage |
|---|---|---|
| Contributions, Gifts, and Grants | 3.582M | 97.61% |
| Program Services | 310.2K | 8.45% |
| Investment Income | 74.91K | 2.04% |
| Sales of Non-Inventory Assets | -183.8K | -5.01% |
| Other Notable Sources | 8.422K | 0.23% |
| Total Revenue | 3.669M | 100.00% |
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