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

Help Unlock Treatments & Cures for Rett with IRSF’s Rett Syndrome Registry

June 17, 2021
Your family can be the key that researchers and industry need to create a world without Rett. And the International Rett Syndrome Foundation (IRSF) is making it easier than ever... Read More

International Rett Syndrome Foundation’s New Center of Excellence Network

May 4, 2021
The International Rett Syndrome Foundation is committed to advancing and expanding our community’s access to best-in-class Rett syndrome care. Toward that end, we are designating 15 partner clinics across the... Read More

COVID Update: Rett syndrome and the COVID vaccine

January 25, 2021
1.25.21 COVID UPDATE: Best practices according to our medical expert. Last month, we shared our recommendations from the Rett Medical Community regarding the Covid-19 vaccine: unless told otherwise by their personal... Read More

Kelsey & Toyua: Friendship & Hope Just 20 Minutes Away

November 18, 2020
Kelsey Clark felt alone and isolated when her five-year-old daughter Charlee was diagnosed with Rett syndrome in April 2019. Kelsey, her partner Jordan, Charlee, and their two-year-old son Bennett live... Read More