About Rett Syndrome

Rett syndrome is a rare genetic neurological disorder that occurs primarily in girls and more rarely in boys. Rett syndrome leads to severe impairments, affecting nearly every aspect of the child’s life. Finding trusted information is the first step towards simplifying this journey. The information found here is reliable, current and vetted by global experts in the field of Rett syndrome.

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What is Rett Syndrome?

Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

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Living with Rett

Life with Rett syndrome presents many challenges. It also presents so many opportunities for joy! We want to help you in your journey of living with Rett syndrome.

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Be Empowered

Get latest information on clinical trials, International Rett Syndrome Foundation educational programs, and local resources to help your family or loved one thrive.

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News and Updates

Taysha Rett Syndrome Community Update

March 30, 2022
From IRSF: 2022 is a big year for Rett syndrome: the return of an in-person Family Summit, a successful EL-PFDD meeting to share the voice of the community with the... Read More

Federal Funding Bill for 2022 Supports Research for Rett Syndrome

March 28, 2022
CINCINNATI – March 22, 2022 – The Omnibus Fiscal Year 2022 (FY22) appropriations bill passed by Congress in early March includes federal funding to support research on Rett syndrome. The... Read More
2021 IRSF funded research

IRSF Sets Up Next Wave of Rett Breakthroughs with $2.3 M Research Investment

December 22, 2021
Dr. Dominique Pichard, IRSF Chief Science Officer Get ready for the next wave of research targeting treatments and cures for Rett syndrome. IRSF is making it happen. “Because Rett syndrome... Read More
Positive Trofinetide Results

Positive Top-line Results for Phase 3 Trofinetide Trial

December 20, 2021
Melissa Kennedy, Chief Executive Officer On December 6, the Rett syndrome community received some very encouraging news: Acadia Pharmaceuticals reported that top-line results for its Lavender Phase 3 clinical trial for... Read More