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International Prader-Willi Syndrome Organization

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IPWSO is an international nonprofit Prader-Willi syndrome (PWS) organisation whose main focus is to:

  • Improve the quality of life for all people with Prader-Willi syndrome and their families.

  • Foster the foundation and development of new national PWS Associations.

  • Encourage national associations to exchange and share their PWS projects and experiences.

  • Provide education and support on PWS around the world.

  • Provide free testing for diagnosis in countries where it is not available.

IPWSO has over 80 member nations. It is run by a President and a Board of Directors, and has both a Scientific and Medical Advisory Board and a Professional Providers Advisory Board. IPWSO is financed by subscriptions from member associations, donations, and grants. It is politically neutral, with no discrimination as to race, sex or religion.

Each IPWSO association is at a different stage of maturity and represents a distinctive cultural approach. This unity and diversity of our membership is the beauty of IPWSO, for when our unique experiences blend together they generate a much richer force than any member alone can possess. By sharing and connecting, they have created a network that moves people’s hearts and saves countless lives.

PWSA (USA) collaboration with IPWSO

PWSA (USA) has played an active role with IPWSO since its formation in 1991. Currently, the IPWSO president is Dr. Suzanne Cassidy, a PWSA (USA) Scientific Advisory Board member, and the IPWSO vice president is Janalee Heinemann, PWSA (USA) Director of Research and Medical affairs. Support and collaboration from the oldest to the youngest national associations is vital to the international PWS family. Although IPWSO members speak many different languages, the universal words, “love for our children,” expresses both the mission of PWSA (USA) and IPWSO. The rarity of a disorder or the location of education and support has no relevance to a parent, so until we discover a cure, we must find better methods of management and share this information. Each life we help makes all the difference.

For more information on IPWSO, go to or email the IPWSO Executive Director, Giorgio Fornasier at:

(Note: Internationally, the word organization is usually spelled organsation)

 Edited: 10/29/2012

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