International Rett Syndrome Foundation
The International Rett Syndrome Foundation (IRSF) is laser-focused on creating a world without Rett syndrome. For nearly 40 years, we have fueled life-changing advancements in research toward a cure.
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Rett Syndrome Primary Care Guidelines
The Rett Syndrome Primary Care Guidelines provide suggested visit schedules by clinical area of assessment, specific concerns to look for and timelines for follow up appointments. Download today to ensure the best care for your child.
National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
Cornelia de Lange Syndrome Foundation Inc.
The Cornelia de Lange Syndrome Foundation is a nonprofit organization providing families and caregivers with a wealth of support, services, education and information about Cornelia de Lange syndrome (CdLS).
NINDS Rett Syndrome Information
The mission is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people.