Resources

FAMILY SUPPORT

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:

OUR RESEARCH PARTNER

Rett Syndrome Reseach Trust

 

OTHER RETT ORGANIZATIONS:

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

 

 

PAPERS ON RETT SYNDROME:

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

 

ADDITIONAL INFORMATION ON RETT SYNDROME:

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

 

 

REGIONAL

FLORIDA: ILRC OF NORTHEAST FLORIDA WEBSITE 
NORTHEAST: The School for Children with Hidden Intelligence WEBSITE

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