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

FDA Grants Trofinetide Priority Review

September 12, 2022
ACADIA has shared the exciting news that the US Food and Drug Administration (FDA) has reviewed the documents received as part of the New Drug Application (NDA) for trofinetide, and... Read More

In-Person Strollathons Are Back!

July 26, 2022
In September IRSF returns with our in-person Strollathons! These nationwide fundraisers bring together local communities to go ALL IN for treatments and a cure for Rett syndrome. Since 2004, these... Read More

IRSF Expands Center of Excellence Network

July 20, 2022
The International Rett Syndrome Foundation is expanding our community’s access to best-in-class care by adding four Rett syndrome clinics to our Center of Excellence network. This expansion helps to fulfill... Read More

Acadia Community Update on Trofinetide

July 20, 2022
July 18, 2022 Dear Rett Community, Acadia is pleased to announce the submission of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for trofinetide for... Read More