We Transform Lives
IRSF exists with a single purpose: to transform the lives of individuals and families living with Rett syndrome every single day.
![Our Story - Rett Doesn't Stop thumbnail](https://www.rettsyndrome.org/wp-content/uploads/2024/10/Our-Story-Rett-Doesnt-Stop-thumbnail-768x768.jpg)
Rett Syndrome doesn’t stop—neither do we.
The International Rett Syndrome Foundation (IRSF) funds transformative research, empowering support, and game-changing advocacy efforts. As a results-driven nonprofit organization, we stand at the forefront of the fight to treat and cure Rett syndrome.
We are fueled by the collective effort of researchers, clinicians, parents, regional associations, advocates, and supporters to help us reach our vision of creating a world without Rett.
Our Promise
To be the single best opportunity to improve the lives of individuals and families living with Rett syndrome.
Our Mission
To accelerate full spectrum research to cure Rett syndrome and empower families with information, knowledge, and connectivity.
Our Vision
To create a world without Rett syndrome.
Our Impact
Trailblazing Research. Empowered Families. Compelling Advocacy.
Invested by IRSF in innovative and ground-breaking Rett research.
Active cutting-edge research projects funded thanks to IRSF donors and supporters.
Every dollar donated to IRSF on average goes towards our mission.
Countries and territories are represented by the thousands of families we support.
U.S. clinics designated as IRSF Centers of Excellence for Rett research and care.
![](https://www.rettsyndrome.org/wp-content/uploads/2024/10/Our-Story-Our-Story-thumbnail-768x769.jpg)
Our Story
We began in 1983 when a tight knit group of dedicated parents came together determined to improve the lives of all children with Rett syndrome. Their passion led to the first non-profit ever to focus exclusively on Rett. Now, for more than 40 years, IRSF and our legacy pioneers have invested more than $58 million to fund breakthrough discoveries and life-changing advancements in research while supporting thousands of families around the world in all stages in their Rett journey.
The International Rett Syndrome Foundation (IRSF) is a 501(c)(3) nonprofit organization based in Cincinnati, Ohio. More than half of our staff and board are parents, grandparents, or caregivers of an individual with Rett syndrome.
Our Legacy
Delivering Real Results
IRSF has been a driving force behind every major scientific discovery that has advanced our understanding and treatment of Rett syndrome for decades. At the same time, we have established a vital care network and resources to support every family living with Rett. Our support has directly led to:
The identification of the gene that causes Rett (MECP2).
The discovery that Rett can be reversed in mice.
The first clinical trial, phase 3 trial, and early clinical trials for gene therapy.
The FDA approval of trofinetide, the first-ever treatment for Rett syndrome.
The 15 years of Natural History Study data informing all Rett research today.
The publication of evidence-based resources in comprehensive care, communication, and more.
The establishment of the U.S. Center of Excellence clinic network to ensure all individuals with Rett have access to high-quality care.
Give them the best opportunity for a better life.
Your investment funds trailblazing research toward Rett treatments and a cure, enables family empowerment, and helps raise awareness about this rare disorder that impacts nearly every aspect of life.