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

Serving & Equipping Families with Rett

July 29, 2020
By Samantha Brant, Family & Community Engagement Manager, Mom to Macy When most families find out their child has Rett syndrome, it’s the first time they’ve ever heard of the... Read More
Gene Modifying Therapy

Gene Modifying Therapy Research: Accelerating Toward a Cure

July 22, 2020
By Dominique Pichard, MD, Chief Science Officer, Rettsyndrome.org We wanted to explain this incredibly complicated work and at the same time let you know that we’ve got you covered. We... Read More

Rettsyndrome.org Launches Rett Research Ready™ and myRett Trial Finder

July 15, 2020
Program supports participation in clinical trials to develop treatments for the rare condition Rettsyndrome.org has launched a program to enable families with loved ones affected by Rett syndrome to explore... Read More

Board of Directors Welcomes Alan Shukovsky —The Father of a Boy Living With Rett

July 10, 2020
When Alan Shukovsky and his wife, Eva, were getting married, their rabbi told them that it was really important for their family to find a personal mission—a cause—they could support... Read More