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

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

Unwavering in Our Mission

October 31, 2019
Rett Syndrome Awareness Month has been incredible. As a community, you rallied like never before – speaking out to share the good, the bad, and the ugly about Rett syndrome... Read More

ACADIA Announces Launch of Phase 3 LAVENDER Study for Trofinetide

October 30, 2019
Dear Rett Community, Today we took a significant step forward with the trofinetide clinical development program initiating the pivotal Phase 3 LAVENDER study. As we have shared before, LAVENDER is... Read More