About Rett Syndrome

Rett syndrome is a rare non-inherited genetic postnatal 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, Rettsyndrome.org educational programs, and local resources to help your family or loved one thrive.

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Our 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

COVID-19 Message for the Rett Community

May 15, 2020
5.15.20 COVID-19 Community Update After months under stay-at-home orders, many states are beginning to reopen. As these changes take place, we wanted to share the following message containing guidance from... Read More

Rettsyndrome.org Announces New Scientific Advisory Board

April 30, 2020
Exceptional Group of Scientific Leaders to Guide Foundation’s Research Investment As Rettsyndrome.org’s Chief Science Officer, a physician, and a mom to a teenager with Rett syndrome, I am dedicated to... Read More
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NEW Resources to Empower & Equip You During COVID-19

April 17, 2020
Rettsyndrome.org has just released these resources to support families who are confined to their homes We know that the shelter-in-place guidelines are especially challenging for our families caring for a... Read More
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Knowledge is Power

January 27, 2020
As a foundation, we know that caring for a child with Rett can be challenging. Connecting to other families, identifying current research and therapies, and finding educational resources can empower,... Read More

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