Resources- Specific Diagnosis Card Catalog- Prader-Willi Syndrome

Who to Contact

The Prader-Willi Syndrome Association (USA)
5700 Midnight Pass Rd.
Sarasota, Fla 34242
Toll-Free: (800) 926-4797
Tel: (941) 312-0400
Fax: (941) 312-0142
E-mail: Reception@pwsausa.org
Web: www.pwsausa.org

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

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.

Where to go to Chat with Others?

Prader-Willi
This is a list for family and friends of people with Prader-Willi Syndrome. This list is to discuss the good and the bad of Prader-Willi and to help bring us together for sharing info or making friends.

PWS Canada
Prader-Willi Canada is a group for parents and caregivers of children and adults with Prader-Willi Syndrome. We can share stories, advice, information and provide support that has a specific focus on Canadian issues.

Positively PWS
Positively Prader Willi Syndrome was started to provide mothers of infants and toddlers with a myriad of information to include play ideas, discussion of alternative therapies, feeding and oral motor suggestions, neuro developmental therapies and other weekly topics of discussion. Membership is limited to parents only of a child with PWS 0-5 years of age. A parent who fits this criteria is welcome to apply with the understanding that those of us in the group will focus on positive interventions

Learn More About It

The Genetics of Prader-Willi Syndrome
An Explanation for the Rest of Us

Medical Alert
Important Considerations For Routine Or Emergency Treatment

Prader-Willi Syndrome
From PedLynx

Glossary of terms associated with PWS

Prader-Willi Syndrome
From GenClinics

Prader-Willi Syndrome
From OMIM

Description of Prader-Willi Syndrome

Prader-Willi Syndrome

Questions and Answers about Prader-Willi Syndrome
From the Arc

The genes involved in PWS and Angelman Syndrome

MEDLINEplus: Prader-Willi Syndrome

Links

Prader-Willi Syndrome Association (USA) Web Site

Ontario Prader-Willi Syndrome Association

Prader-Willi Syndrome Association of the United Kingdom