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Resources
Prader-Willi Syndrome Association USA About this site: The Prader-Willi Syndrome Association was established in 1975 to provide education and support to individuals with Prader-Willi Syndrome, their families, and the health care community. The site offers everything from introductory information for families of the newly diagnosed to a grant program that supports research into Prader-Willi Syndrome. (http://www.pwsausa.org/) Pluses: This site is both friendly and authoritative. Minuses: Some pages do not explain technical terminology such as hypotonia, requiring readers to find and consult the site's glossary of terms. Best feature: For families of the newly diagnosed, the site has a welcome page that offers free booklets, a video with basic information on Prader-Willi Syndrome, and a free membership in the Association. |
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