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Other Names for this Disease
- Autism, dementia, ataxia, and loss of purposeful hand use
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.
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Organizations Supporting this Disease
Autism Society of America
4340 East-West Highway, Suite 350
Bethesda, MD 20814-3067
International Rett Syndrome Association
4600 Devitt Drive
Cincinnati, OH 45246
Social Networking Websites
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- RareConnect has an online community for patients and families with this condition so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.