Family Empowerment Representatives
Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, Rettsyndrome.org
[email protected] 1-913-221-8157
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
Community Service Board (CSB)
Infant and Toddler Connection of Virginia
Care Connection for Children
Care Connection for Children is a statewide network of six regional programs that coordinates the health care, community support services and resources to children with special health care needs, [email protected]
Transition to Adult Services
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Dr. James Wilson
Carilion Pediatric Neurology 1
Dr. Richard Cordle
Carilion Pediatric GI/Nutrition Clinic 1