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

The Summit of Hope and Healing: ASCEND 2022 Rett Syndrome National Summit

June 8, 2022
By Katie Busch, IRSF Program Coordinator –  During the last week of April 2022, the International Rett Syndrome Foundation welcomed more than 500 members of the Rett community to the... Read More
Clinical Trial Committee

IRSF Launches Clinical Trial Committee to Support the Development of Rett Syndrome Treatments

May 31, 2022
The Clinical Trial Committee includes 14 leading U.S. Rett syndrome specialists CINCINNATI – (May 31, 2022) – The International Rett Syndrome Foundation (IRSF) announced today that its Clinical Trial Committee... Read More

Accelerating Discoveries in Rett Research: 2022 IRSF Rett Syndrome Scientific Meeting

May 26, 2022
In April 2022, the International Rett Syndrome Foundation hosted the IRSF Rett Syndrome Scientific Meeting in advance of the foundation’s first in-person family summit in 6 years. The 2-day meeting... Read More

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