You Are Not Alone

Rettsyndrome.org is comprised of parents and friends of those diagnosed with Rett syndrome who have walked this journey. We are dedicated to providing families with the latest medical information, aggressively funding the most promising research for a cure, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome.

Newly Diagnosed

Find resources and connect you with people and families that are on the same journey.

Living with Rett

Find information about being newly diagnosed, care guides and more.

Rett Syndrome Clinics

Find local and international clinics available to you.

Clinical Trials

Learn about Rett syndrome clinical trials and studies that may be right for your family.

Natural History Study

Learn how and why your child can participate in this vital study – at any age.

Rett Education

Find out more about the educational opportunities available to families and caregivers.

Resources

Find out what resources are available in your state and internationally.

Pageant Queen and Girl

Connect

Find out ways that you can connect with other families and people in your community.