Prader-Willi Syndrome

• Who to Contact
• Where to Go to Chat with Others
• Learn More About It
• Web Sites
• Search Google for "Prader-Willi Syndrome"

Who to Contact

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
http://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; 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.

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.
• PWS USA Birth - 5
  This PWS E-Mail Support/Information Program is sponsored by Prader-Willi Syndrome Association (USA) to provide information and support to parents of children who have Prader-Willi Syndrome (PWS), as well as care providers, extended family members, and professionals. Participants in this eSupport Group provide support to each other, share information and parenting strategies, and discuss issues related to age of their child, birth to 5 years. The program provides the opportunity to connect people who wish to share their experience or expertise handling the unique day-to day issues and feelings that so many parents and family members may face who have children with PWS. No one need feel alone.
• Foundation for Prader-Willi Research (FPWR)
  Intends to accelerate research in Prader-Willi syndrome (PWS) by raising funds and attracting researchers to projects which have the greatest potential for finding effective treatments and eventually a cure for this condition. This message board is one of the benefits of membership in FPWR and participation is limited to FPWR members. Information on FPWR membership is available at our website at www.fpwr.org. All FPWR members will receive an invitation to join this message board once their membership applications are complete.
• 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
• Glossary of terms associated with PWS
• Prader-Willi Syndrome - From GenClinics
• Prader-Willi Syndrome - From OMIM
• Description of Prader-Willi Syndrome
• The genes involved in PWS and Angelman Syndrome
• MEDLINEplus: Prader-Willi Syndrome
• PWS from eMedicine

Web Sites

• Prader-Willi Syndrome Association (USA) Web Site

• Ontario Prader-Willi Syndrome Association
  
• International Prader-Willi Syndrome Organisation
  
• Prader-Willi Syndrome Association of the United Kingdom
  
• Asociación Civil para Síndrome de Prader-Willi (Argentina)
  
• The Prader-Willi Syndrome Association (New Zealand)  

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Last Updated June 10, 2009 by familyvillage@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_pws.htm