Join Rett Syndrome Angels & Giving Tuesday on November 29, 2022 BE APART OF OUR GIVING DAY In honor of Giving Tuesday 2022, we ask you to share this campaign…
Category: News
Rett is Rare
Join Rett Syndrome Angels & Rare Disease Day Campaign!(2.28.22) Rett syndrome is a rare, devastating disease affecting a special person in my life. Please help make Rett syndrome not rare,…
RSAM Latest News
As we all cope with adjusting to life in the time of COVID-19, here’s what RSAM has done in an effort to help families.
Letter from Dr. Lieberman Concerning Covid-19
Boston Children’s Hospital is continually re-assessing the situation and providing updates.
Guardianship Tips and Process
A Parent’s Journey: Helpful Tips for Completing Guardianship For Your Disabled Child In Massachusetts
Rett Family Picnic
Coming Late Summer 2020
Researcher Profile: Michela Fagiolini, PhD | Boston Children’s Hospital
“The families don’t give up and they do believe in basic research. ” Meet Michela Fagiolini, PhD, a neuroscience researcher at Boston Children’s Hospital, who studies how brain development is altered in autism-related disorders like Rett Syndrome and CDKL5.
Boston Marathon: Thank you to all our Team Rett Runners!
Thank you to all our Team Rett Runners and all those who supported the team with generous donations, cheering the team along the way and overall encouragement and support.
The Day We Met Dr. Rett
My daughter, Erika, is now forty years old so we have been in the Rett World for a long time. We had never heard of Rett syndrome until Erika was six years old, but neither had almost anyone else in the world!
Taking steps towards Rett syndrome awareness: Blue Sky Day
Every October, families from across the globe celebrate Blue Sky Day as a way to bring awareness to Rett syndrome, a neurological disorder that affects one out of every 10,000 girls born each year