
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.

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, Rettsyndrome.org educational programs, and local resources to help your family or loved one thrive.
Learn MoreOur Mission
For 20 years, we have relentlessly pursued advanced and comprehensive research to transform the lives of all those affected by Rett syndrome. We are focused on delivering treatments and ultimately a cure for Rett syndrome while empowering families with the resources, connections and encouragement they need to thrive.
News and Updates


Kelsey & Toyua: Friendship & Hope Just 20 Minutes Away

Setting the Standard in Best-in-Class Care and Rett Syndrome Centers of Excellence
