Rett Syndrome Program

At the Boston Children’s Hospital Rett Syndrome Program, we are dedicated to helping children and adults who have Rett syndrome and related conditions 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.

Our depth of experience in 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 related disorders, including Foxg1 and NECp2.

We conduct extensive research on all aspects of Rett syndrome, and collaborate with researchers to develop new treatments for our patients.