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.

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

March 31, 2020
3.31.20 COVID-19 Community Update Coronavirus Disease 2019 (COVID-19) has forced many changes across the world. But we will not let it change our support for our community. Please know that... Read More

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

A Note from Chief Science Officer Dr. Dominique Pichard

November 12, 2019
A Note from Chief Science Officer Dr. Dominique Pichard I am thrilled to be joining Rettsyndrome.org as the Chief Science Officer. Rett syndrome is near and dear to me and... Read More

When Molly met Jill: Rett Connection Becomes Fast Friendship

November 8, 2019
— Becky Sher Molly Prichard jokes that she and best friend Jill Black met “online dating.” And to hear them talk about their fast friendship does sound like a conversation... Read More

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