Prader-Willi Syndrome Association (U.S.A.) - PWSA
Organization URL(s)
national@pwsausa.orgwww.pwsausa.org/
Other Contact Information
8588 Potter Park Drive, Suite 500
Sarasota,
FL 34238
800-926-4797 (Voice - Toll-free)
941-312-0400 (Voice)
941-312-0142 (FAX)
Description
The Prader-Willi Syndrome Association is a group for parents and professionals interested in children affected by Prader-Willi Syndrome. The Association provides a forum for the exchange of ideas and experiences. The Association sponsors an annual conference and publishes educational material.
Online Resources
- Questions and Answers on Prader-Willi Syndrome
http://www.pwsausa.org/faq.htm
Print Resources
Educational materials include a handbook available in English, French, and Spanish for parents, conference papers, fact sheets on dietary management of the Prader-Willi person, and a Prader-Willi Syndrome bibliography. Serial publication: Gathered View (newsletter), bimonthly--accounts of Association projects and funding, idea exchanges among parents of Prader-Willi children, and dietary planning suggestions. A videotape is available for rental, and a slide tape presentation may be rented or purchased.