Other Rett News, Events
and Fundraisers

Trofinetide Clinical Trial
Visit our Research page for more info and If you are interested in participating in the study contact Lindsay Swanson at 617-355-5230 or RettResearch@childrens.harvard.edu

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
Email: RettResearch@childrens.harvard.edu
Please visit www.rettstudy.com or clinicaltrials.gov for further information about the trial. Latest updates can also be found on the rettsyndrome.org Facebook page .

Raising a Hand
for Rett - The Book


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. 

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

Families helping Families living with Rett Syndrome

RSAM is a proud sponsor of the Phase 2 IGF-1 Clinical Trial for Rett Syndrome currently underway at the Boston Children's Hospital

Researchers at Children's Hospital Boston are continuing the randomized, placebo-controlled trial to test a potential drug treatment for Rett syndrome. The drug, Mecasermin, a synthetic form of insulin-like growth factor-1 (IGF-1), was shown to be safe during the phase 1 trial. 

The trial follows research in animal models which suggested that raising IGF-1 levels can reverse features of Rett syndrome by enhancing maturation of synapses -- the points of communication between brain cells.

For additional information on the Phase 2 trial, visit http://www.rettsyndrome.org/news-and-media/irsf-communications/press-releases/phase-2-clinical-trial-study-of-igf-1 or contact the Rett Syndrome Program at Children's Hospital Boston. 

Other Clinical Trials
To learn more about current and past clinical trials, please visit http://www.rsrt.org/research/clinical-trialsstudies/