PWSA (USA) is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.

Información en Español

In the spotlight

• Read The Washington Post’s June 23, 2009 article about the First International Hyperphagia Conference by clicking here. Please note: Janalee Heinemann’s, PWSA (USA) director of research and medical affairs, clarification of a misquote. She said, “I did not say, ‘I do not think there is going to be a pill.’ I said that ‘I do not think it will be so simple to find the right pill as I once thought.’…It still is good publicity.”
• Sign-On in Support of the IDEA Fairness Restoration Act (HR 2740) click here
• The Consumer Guides to Getting and Keeping Health Insurance, which are researched and published by Georgetown University’s Health Policy Institute, are now available free online at healthinsuranceinfo.net. We encourage you to use this resource.
• Find us on Facebook! Click here to join our Cause and dedicate your page to raising PWS awareness.
• Help our PWS Researchers Make Progress on the Syndrome. For many of them, they are dependent on your help. Please consider participating in one or more of their research projects.  Click here and join the PWS research team.
• Regional Focus and Support Groups in your area. [Click here] to learn more.
• Front Page News Archive  Items formerly on our front page that cannot be found elsewhere on our site may be kept in a news archive.

Updates

• New Website Resource! PWS Overview and Management - Medical Home Portal Development, Utah Medical Center. Once you access this website and go to the section called “Diagnosis and Conditions” click on the different links. Dr. Merlin Butler, chairperson of our PWSA (USA) Scientific Advisory Board, reviewed and edited this website written for families and primary care physicians needing quick and accurate information. To access this site, [Click here]
• Organizational changes - a page from our current  issue of the Gathered View [Click here]
• Recent medical and research updates...[click for more]
• Growth Hormone
• SSI Resource
• Get the newsletter, The Gathered View, electronically Click here

If you are in need of help or advice, please call (800) 926-4797 or email national@pwsausa.org.  We are here to help you!