Prader-Willi Syndrome Association (USA)

A nonprofit organization

$12,980 raised by 142 donors

PWSA (USA was organized in 1975 to provide support for individuals, families, professionals and organizations and to be a resource for education and information about Prader-Willi syndrome. The organization was first headquartered in Minneapolis, then moved to St. Louis, Missouri, and then found its permanent home in Sarasota, Florida in October of 1997.

The association is governed by a national board of directors. The board works in conjunction with the paid and volunteer staff of the national headquarters, and a network of chapters throughout the country to direct the organization's operations and serve its members.

A quote from Jennifer B. who has a daughter with Prader-Willi Syndrome:


"This is my association because the people of PWSA(USA) have given us hope: hope that Sophie can and will live a good life, hope because they are advocating for us at all times, hope because they have supported research efforts for many years even as they also advocate for “quality of life” for our children with PWS."


Organization Data


Organization name

Prader-Willi Syndrome Association (USA)

Tax id (EIN)



8588 POTTER PARK DRIVE Suite 500


(941) 312-0400