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Rett Syndrome Program |Overview

At the Boston Children’s HospitalRett Syndrome Program, we are dedicated to helping children and adults who haveRett syndromeand related conditions such asMECP2-related disorder,MECP2duplication disorder, andFOXG1syndrome develop to their full potential.

We bring together a comprehensive team of physicians and therapists from a wide range of specialties, fromaugmentative communicationanddevelopmental pediatricstocardiologyandgastroenterology. 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 byRettsyndrome.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, includingMECP2-related disorder,MECP2duplication disorder, andFOXG1syndrome.

We conduct extensiveresearchon 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’sCenter for Patients and Families websiteoffers 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 theAugmentative 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 theAutism Consortium,一群研究人员,临床医师和家庭dedicated to accelerating research and enhancing clinical care for autism and related disorders including Rett syndrome.

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