Our Family Support is a hub for all things Rett. We wanted a place for parents, caregivers, teachers, therapists and medical professionals to be able to find, share and recommend what is working for them – and who is helping them the most. Rather than scouring through long threads of social media conversation to find information, use the SEARCH feature to find what you need:
Rett Syndrome Reseach Trust
Army of Us
Claire’s Crusade
Crush Rett
Israel Rett Syndrome Center
New Jersey Rett Syndrome Association
Nederlandse Rett Syndroom Vereniging – NETHERLANDS
Northwest Rett Syndrome Association
Norsk Forening for Rett Syndrom – NORWAY
Rett Syndrome Association – MASSACHUSETTS
Rett Syndrome Association – RUSSIA
Rett Syndrome Association – UNITED KINGDOM
Rett Syndrome Europe
RSIS Rett Syndrom i Sverige – SWEDEN
RettSyndrome.org
Reverse Rett (UK)
Rocky Mountain Rett Association
Sindrome de Rett Espana – SPAIN
Southeastern Rett Syndrome Alliance
Stuðningssíða barna með Rett heilkenni – ICELAND
TheraVive – Licensed Counseling Near You
Unrecognized Lung Disease in Classic Rett Syndrome: A Physiologic and HRCT Study
Cognitive Abilities of Rett Syndrome Patients have been Underestimated for Decades:
Dr. Djukic from Montefiore Medical Center, NY
Silent Angels: Educating Others About Rett Syndrome
From Katie’s Clinic for Rett Syndrome, Oakland, CA
Videofluororadiographic Descriptors of Swallowing Physiology in Typical Rett Syndrome: Post-Regression Stabilization During Early Childhood
Suzanne S. Abraham
Multi-Modal Communication Strategies for Children Who have Rett Syndrome
Linda J. Burkhart
Optimizing Nutrition for Girls Affected with Rett Syndrome
Sara-Jane White, Doctor of Naturopathic Medicine
Deep Sedation With Propofol in Patients With Rett Syndrome
Alan K. Percy, MD, et al
ABOUT “GIRLS WITH RETT SYNDROME”
LETTER FROM RJ COOPER – Pioneer in Assistive Technology www.rjcooper.com
Sample Home Exercise Program
NOTE: Please check with your Rett Girl’s therapists or doctor before starting any of these exercises.
HELPFUL WEBSITES
NATIONAL GRANTS AND FUNDING
SPECIAL NEEDS TRAVEL RESOURCE
SUPPORT WITH CLINICAL TRIALS
FLORIDA: ILRC OF NORTHEAST FLORIDA WEBSITE
NORTHEAST: The School for Children with Hidden Intelligence WEBSITE