The Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, Florida 34238 USA
Toll-Free: (800) 926-4797
Tel: (941) 312-0400
Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi Syndrome (PWS), their families, and interested professionals. To provide information, education, and support services to its members, PWSA offers: a toll-free telephone number for information and referrals; a bimonthly newsletter, The Gathered View; publications and audiovisual presentations about PWS (See Publications Available From P.W.S.A.); an annual national conference for families and professionals (See Annual PWSA(USA) National Conference); a nationwide network of local chapters, parents, and professionals See PWSA (USA) Chapters and Affiliated Organizations; research funding to expand knowledge and treatment options; and Representation on the international level.
Organized in 1975 to provide a resource for education and information about Prader-Willi syndrome and support for families, professionals and other interested citizens, PWSA(USA) was first headquartered in the Minneapolis/St. Paul area, then in St. Louis, Missouri, and currently in Sarasota, Florida since October of 1997. The association is governed by a 12 member Board of Directors who, together with an executive director and four officers, are responsible for directing the organization's operations and serving the 27 state and regional chapters and their members. In addition, 11 health service professionals serve on a Scientific Advisory Board to review research proposals.
The national PWSA conference is held in July or June of each year and features a day of preconference meetings focused on current research and group home management, followed by three days of educational sessions for both families and professionals.