Peds lab

Rett Syndrome

Media Type

Online Resource

Reviewed Date

Oct 14, 2025

Body

Rett Syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs primarily in girls and more rarely in boys. Rett syndrome leads to severe impairments, affecting nearly every aspect of the child’s life. Finding trusted information is the first step towards simplifying this journey. These resources will aid you in finding support and trusted information.

International Rett Syndrome Foundation (IRSF)
IRSF helps families by funding research and offering programs to improve life for people with Rett Syndrome. They run two online communities:

RettNet: A free email group where parents can ask questions and share support.

IRSF Forum: A place to share ideas and news about care and research. Click “Online Communities” to join.
Phone: 513.874.3020

Rett Syndrome Association of Illinois (RSAI)
RSAI helps families learn about Rett Syndrome and stay updated on research. They host events like conferences and support groups, and publish a newsletter twice a year.
Phone: 312.953.1950
 
Rett Syndrome NORD – National Organization for Rare Disorders
NORD shares detailed information about Rett Syndrome, including symptoms, treatments, and causes. 
Phone: 617.249.7300

 

 

 

This content is for informational purposes only and may not be comprehensive. Information contained does not imply an endorsement from Shirley Ryan AbilityLab, and does not replace the advice of a qualified healthcare professional.  See here  for further details.

© Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago)
Henry B. Betts LIFE Center – (312) 238-5433

 

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