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Revision as of 02:17, 27 November 2004

PWS Notes

PWS Notes is designed to provide useful background on Prader-Willi Syndrome (PWS) for parents and to organize medical information that may be helpful for future research directions.

This wiki was created by PWSMom and is particularly dedicated to the new generation of PWS children who are receiving the advantages of early interventions.

What is a Wiki?

This site is a wiki designed to be edited by any interested member of the PWS community, including family, researchers, and others. If you see information that should be changed or added, please create an account (it's free and takes just seconds) and then click the Edit button at the top of any page. The best example of the power of wikis is the Wikipedia, the most comprehensive encyclopedia in history, which is assembled by regular people serving as writers and editors.

The PWS community has several excellent Mailing Lists. However, these tend to both annoy long-time participants by repeating the same info while not providing good information to new participants because of the lack of organization and poor searching. This wiki is designed as a compliment to those mailing lists and other forums. If you're writing an email about PWS that could be useful to others, please consider adding it to a page on this wiki to make the info more generally useful. Please be aware that while some mailing lists have restricted access, this wiki is open to anyone and so private information should not be shared.

Wiki Pages

• Health Issues
  • Early interventions
  • CoQ10 is an enzyme believed to help PWS children
  • Physical therapy
  • EFAs (Essential Fatty Acids)
• Social Issues
• Behavior research by Dr. Ross Greene
• Medical Research
• Feeding PWS babies
• Health Care Guidelines from PWSAUSA
• PWS websites