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Community and Internet Resources


Community: Support Groups and Disability Specific Organizations

Rett Syndrome

National

International Rett Syndrome Association is a partnership of parents and professionals united in purpose to bring greater understanding of Rett syndrome. Their website provides general information on Rett syndrome, diagnosis information, as well as information on day to day care, available treatments and therapies and the latest in research. They also offer the Rett Gazette, a free quarterly e-newsletter to their members. For more information, visit their website, call (800) 818-7388, or e-mail irsa@rettsyndrome.org.

Rett Syndrome Research Foundation (RSRF) was created in the fall of 1999 by six parents of children with Rett Syndrome. Their mandate is clear: "to find treatments and a cure for Rett Syndrome, a neurological disorder that strikes primarily little girls, depriving them of communication and motor skills and rendering them dependent on others for every basic need." Their website offers general information on the syndrome, the latest on research and policy development, as well as an opportunity to sign onto their e-mail news alert. For more information, visit their website or call their office in Ohio at(513) 874-3020.

For more on the topic of Community:

Community and Internet Resources / Editorials / FAQ / Library and Research: News Publications and Media

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[Updated February 27, 2004]
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