Rett Syndrome: For Patients and Consumers

General Information

• A brief overview of Rett syndrome's symptoms can be found at http://rarediseasesnetwork.epi.usf.edu/arpwsc/learnmore/index.htm#rs
• For a list of frequently asked questions, provided by the International Rett Syndrome Foundation, see http://www.rettsyndrome.org/about-us/about-rett-syndrome/frequently-asked-questions
• National Library of Medicine
  • Genetics Home Reference: Rett Syndrome
  • Medline Plus: Rett Syndrome

Services, Resources, and Support

• The Genetics Home Reference provides consumer-friendly information about the effects of genetic variations on human health. The genetic consultation webpage includes resources for finding a genetics professional.
  • Read "How can I find a genetics professional in my area?"
• The mission of the International Rett Syndrome Foundation is to fund research for treatments and a cure for Rett syndrome and to provide information, programs, and services for those living with the syndrome.
  • Locate a local representative.
  • Join the listserv.
  • Become part of a support network.
  • Watch a video about Rett syndrome research.
• Rett Girl is a resource and referral site for families who have daughters with Rett syndrome.
  • Search for a health care provider.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.