Creating a World without Rett Syndrome
Today, as the International Rett Syndrome Foundation, we continue our almost 40-year commitment to creating a world without Rett. We remain focused on accelerating research to treat and cure Rett syndrome as we empower families with information, knowledge, and connectivity.
Through IRSF and our legacy foundations’ investments, we are continuing to change the landscape of Rett syndrome.
- Funded the discovery of the gene that causes Rett syndrome (MECP2)
- Funded the discovery of reversibility of Rett syndrome in mice
- Funded early gene therapy work in Rett syndrome
- Funded the first Rett syndrome clinical trial and the development of the first Phase 3 trial
- Funded early-phase clinical trials of trofinetide, the first-ever FDA-approved treatment for Rett
- Convened parents and experts to publish the Rett Syndrome Handbook
- Designated 18 Rett Syndrome Centers of Excellence
These concise reports highlight our annual accomplishments in research, fundraising and family empowerment. For full financial information, please click here.
In 1983, a small dedicated group of parents whose children had Rett syndrome formed the first non-profit to focus exclusively on Rett syndrome – International Rett Syndrome Association (IRSA). In 2007, IRSA and Rett Syndrome Research Foundation (RSRF) consolidated resources to better serve families and maximize research investments toward a cure. The International Rett Syndrome Foundation (IRSF) emerged with a mission to accelerate research and empower families that builds upon these foundations’ pioneering work toward care and cure.
Meet the IRSF team and advisory board, many of whom are parents to individuals with Rett themselves.
At IRSF, we value our partnerships and the way they help to support our organization and research.
IRSF is a 501(c)(3) organization. In FY22, more than 85% of every donor dollar was devoted to our mission.