A diagnosis of Rett Syndrome can feel devastating. But every day we work with children and families who give us great hope. You may find it helpful to talk not only with us, but also with the families of other children in our Rett Syndrome Program at Boston Children’s Hospital. In addition, there are several active organizations that offer information and support to families affected by Rett.
The family community at our Rett Syndrome Program
A key part of our program is the Parent Advisory Group. Thisgroup facilitates communication between families and our medical team. They help us disseminate information about new developments in the clinic, and we depend on them to give us feedback about what aspects of families’ experiences at Children’s can be improved. We are grateful to them for the essential role they play in our program.
Some of the members of our Parent Advisory Group also serve as leaders in the Rett Syndrome Association of Massachusetts (RSAM) and the International Rett Syndrome Foundation.
External groups and resources
Please note that neither Boston Children’s Hospital nor the Rett Syndrome Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below.
The Rett Syndrome Association of Massachusetts (RSAM) isa nonprofit organization that provides support, education and information to families as well as to the medical and educational communities.
The International Rett Syndrome Foundation (IRSF) is dedicated to providing families with the latest medical information and support. It raises public awareness and advocates for those living with Rett syndrome. The IRSF publishes The Rett Syndrome Handbook, an exhaustive guide for families and medical professionals.
The Rett Syndrome Research Trust is a nonprofit organization intensively focused on the development of treatments and cures for Rett Syndrome and related MECP2 disorders.
This Rett Syndrome Information Page from the National Institute of Neurological Disorder and Stroke has information about the disorder and its prognosis, treatment and research.
Children’s is part of the Autism Consortium, a group of researchers, clinicians and families dedicated to accelerating research and enhancing clinical care for autism and related disorders including Rett syndrome.
This website on Autism, Asperger’s syndrome and related disorders provides fact sheets for everyone affected by these disorders, whether directly or indirectly. There is an emphasis on practical strategies.
Resources throughout Boston Children’s
The Boston Children’s For Patients and Families website offers information on the wide array of support services available to families at Boston Children’s.