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

Dr. Dominique Pichard

Rettsyndrome.org Announces New Chief Science Officer with Rett Syndrome Connection

September 17, 2019
The International Rett Syndrome Foundation (doing business as Rettsyndrome.org) has officially welcomed Dominique Pichard, MD to the organization as their new Chief Science Officer. A highly accomplished clinician and researcher,... Read More

New Research Funding to Provide Hope to Girls and Boys

June 4, 2019
Rettsyndrome.org Funds Research to Provide Hope for Females and Males Affected by MECP2 Mutation. CINCINNATI, OH – June 3 – Rettsyndrome.org announced their funding of two new research projects today.... Read More
Learning Collaborative Group Shot

RSO Hosts Learning Collaborative for Rett Clinics

June 4, 2019
Rettsyndrome.org hosted a clinical Learning Collaborative on May 8 and 9 in Denver. The Learning Collaborative is made up of physicians and clinicians from Rett clinics around the country who... Read More

Rettsyndrome.org Appoints Joseph Horrigan, MD to Board of Directors

May 3, 2019
Rettsyndrome.org Appoints Joseph Horrigan, MD to Board of Directors CINCINNATI, OH – May 3 – Rettsyndrome.org is pleased to announce that Joseph P. Horrigan, MD has joined its Board of... Read More