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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.
The Rett Syndrome Association ( of Illinois - RSAI) supports families in their ongoing efforts to understand Rett Syndrome and to stay apprised of advancements in research for new treatments. The association hosts conferences, workshops and support group meetings, publishes a newsletter two times a year, and collects and disseminates information about Rett Syndrome.
https://rettillinois.org/ 312-953-1950
International Rett Syndrome Foundation (IRSF) funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.” The foundation provides opportunities for parents to join “RettNet”, a moderated email list serve forum, where parents can post questions, get information, or just have a shoulder to lean on. They have support contacts in most states and support in the area of single parents, dads, grandparents and sibling support.
RettNett is free and easy to join. There is another online community called IRSF Forum which provides a virtual online community for positive input, news, information, and the exchange of ideas around the care and cure of Rett syndrome. https://www.rettsyndrome.org/ click on “Online Communities” to find RettNet and IRSF Forum (513) 874-3020
Rett Syndrome NORD - National Organization for Rare Disorders is the leading organization for rare disorders and has a full descriptive entry with diagnostic symptoms, investigational therapies, resources, and causes and an online community for connecting with others and finding clinical trials to progress research. They also offer an online community called
RareConnect that offers a safe patient-hosted online community for patients and caregivers affected by this rare disease.
visit www.rareconnect.org. or https://rarediseases.org/rare-diseases/rett-syndrome/ 858-966-6458
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.
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