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.

Our Impact

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

Impact Reports

These concise reports highlight our annual accomplishments in research, fundraising and family empowerment. For full financial information, please click here.

2022 | 2021 | 2020 | 2019 | 2018 | 2017 | 2016 | 2015 | 2014


Strong Foundations

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.

Recent News & Updates