About Rett Syndrome

Rett syndrome is a rare genetic 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, International Rett Syndrome Foundation educational programs, and local resources to help your family or loved one thrive.

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News and Updates

IRSF Appointed to NHC Standard of Excellence Program

September 10, 2021
The National Health Council (NHC) Standard of Excellence program recently appointed IRSF to its prestigious membership. The NHC is a 100-year-old organization whose mission is to provide a united voice... Read More

COVID UPDATE: Best practices according to our medical expert

August 17, 2021
As COVID numbers surge once again, we have asked IRSF Medical Advisor Dr. Tim Benke, Rett Clinic Medical Director at Children’s Hospital Colorado, to provide information related to COVID-19 to... Read More

Help Unlock Treatments & Cures for Rett with IRSF’s Rett Syndrome Registry

June 17, 2021
Your family can be the key that researchers and industry need to create a world without Rett. And the International Rett Syndrome Foundation (IRSF) is making it easier than ever... Read More

International Rett Syndrome Foundation’s New Center of Excellence Network

May 4, 2021
The International Rett Syndrome Foundation is committed to advancing and expanding our community’s access to best-in-class Rett syndrome care. Toward that end, we are designating 15 partner clinics across the... Read More