Rett Syndrome Program,
​Children's Hospital Boston

The Rett Syndrome Program at Children’s Hospital Boston is the only specialist Rett syndrome program in New England. CHB sees more than 250 patients who have Rett syndrome and related disorders.

Specialized Treatment
The physical symptoms of Rett syndrome, such as seizures, gastrointestinal problems and musculoskeletal problems, can often be alleviated and managed. The Rett Program brings together Children's physicians and therapists who are experienced in caring for children and adults with Rett syndrome. 

David Lieberman, MD, PhD
Rett Syndrome Program
Children's Hospital Boston/Harvard Medical School
Fegan 11
300 Longwood Avenue
Boston, MA 02115

Raising a Hand
for Rett - The Book

Clinical Trials

To learn more about current and past clinical trials, please visit 

Trofinetide (NNZ-2566) Clinical Trial Currently Recruiting Participants

Neuron Pharmaceuticals is currently conducting a Phase II clinical trial of a potential new treatment for pediatric Rett syndrome (females aged 5-15 years). This is taking place at various locations across the US and reimbursement is available for reasonable travel costs incurred during participation.  
The study is now open for recruitment at Boston Children’s Hospital. If you are interested in participating in the study at this site, please find their contact details below:
Contact: Lindsay Swanson
Phone: 617-355-5230
Please visit or for further information about the trial. Latest updates can also be found on the Facebook page .

Families helping Families living with Rett Syndrome

Donate Today

At Rett Syndrome Association of Massachusetts, Inc. we are working to create hope and the opportunity for a better world. But we can only do it with your help. Join with us in our mission and donate now.