Rett Syndrome Program | Patient Resources

The family community at our Rett Syndrome Program

A key part of our program at Boston Children's is the Parent Advisory Group. This group facilitates communication between families and our medical team. They help us spread information about new developments in the clinic, and we depend on them to give us feedback about what aspects of families’ experiences at Boston Children’s can be improved. We are grateful to them for the essential role they play in our program.

The Boston Children’s Center for Patients and Families website offers information on the wide array of support services available to families at Boston Children’s.

Making strides through education

In addition to caring for the medical needs of our patients, we place great importance on helping children with Rett syndrome learn and communicate. We have seen that educational therapies can be enormously helpful to children with Rett syndrome. Our educational resource coordinator will help your family find and access appropriate educational resources for your child.

A wonderful resource at Boston Children’s is the Augmentative Communication Program. Here, speech-language pathologists work with many of our patients to find creative, effective strategies for communication.

External groups and resources

Boston 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.

The Rett Syndrome Association of Massachusetts (RSAM) is a nonprofit organization that provides support, education and information to families as well as to the medical and educational communities.

Rettsyndrome.org 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.

The Rett Syndrome Information Page from the National Institute of Neurological Disorder and Stroke has information about the disorder and its prognosis, treatment and research.