Rett Syndrome Program | Overview
At the Boston Children’s Hospital Rett Syndrome Program, we are dedicated to helping children and adults who have Rett syndrome and related conditions such as MECP2-related disorder, MECP2 duplication disorder, and FOXG1 syndrome develop to their full potential.
We bring together a comprehensive team of physicians and therapists from a wide range of specialties, from augmentative communication and developmental pediatrics to cardiology and gastroenterology. All have expertise in caring for children with Rett syndrome. We also work closely with occupational and physical therapists, social workers, and a nursing team to create the best possible treatment plan for your child. We make every effort to coordinate visits with different specialists on the same day whenever possible.
An important part of our program is helping our patients access resources to help them learn. We offer specialized neuropsychological testing to identify each child’s individual learning skills. This is helpful in finding the right educational setting for them.
Experts in diagnosing Rett syndrome
Our program is the only specialized Rett syndrome program in New England. We have been designated as a Research and Clinical Center of Excellence by Rettsyndrome.org.
We care for more than 250 patients who have Rett syndrome and related disorders. While most children with Rett syndrome are girls, boys can have related disorders, and we care for a number of boys in our program.
Our specialists are leaders in evaluating and diagnosing children with Rett syndrome. Our team has played a key role in revising clinical criteria of Rett syndrome. We also specialize in diagnosing and treating children with atypical or variant Rett syndrome and related disorders, including MECP2-related disorder, MECP2 duplication disorder, and FOXG1 syndrome.
We conduct extensive research on all aspects of Rett syndrome, and collaborate with researchers to develop new treatments for our patients.
How the Rett Syndrome Program supports families
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.
Educational resources for children with Rett Syndrome
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.
Rett Syndrome 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.
- 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.
- Rett Syndrome Research Trust is a nonprofit organization intensively focused on the development of treatments and cures for Rett Syndrome and related MECP2 disorders.
- Rett Syndrome Information Page from the National Institute of Neurological Disorder and Stroke has information about the disorder and its prognosis, treatment, and research.