Rett syndrome is a complex disorder and requires specialized care and understanding to help your child and family thrive. Rett syndrome clinics understand the diagnostic criteria of Rett syndrome and are dedicated to identifying the various needs of those diagnosed with Rett syndrome.

IRSF has designated 21 Rett clinics as Centers of Excellence. They are dedicated to providing best-in-class clinical care and have demonstrated the following:

  • A physician director with expertise in Rett syndrome care
  • Health care services that meet the unique needs of individuals with Rett
  • Involvement in clinical trials
  • Contribution to the IRSF Rett Syndrome Registry to increase understanding of Rett syndrome and support drug development

Your child’s care may come from many local providers who may not be familiar with Rett syndrome. Visiting a specialty clinic will benefit your child and provide a source of experts for the local care provider to consult with if complex issues arise.

IRSF has put together a brief survey to learn more about where families go for care. If you go to a COE, we want to know about the care you receive there. And if you receive excellent care outside the Network, we want your clinician recommendations to share and help families everywhere get the best care for their loved ones. Share your feedback and recommendations by CLICKING HERE

Download the Guide to Clinic Visits

Please note that clinic policies vary on the age of individuals with Rett treated, insurance accepted, etc. We recommend contacting the clinic directly to make an appointment, discuss payment & insurance options, and make sure you have the most up-to-date information.