International Prader-Willi Syndrome Organization
Family Support Survey - please download this
survey to participate.
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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
foundation and development of new national PWS Associations.
associations to exchange and share their PWS projects and
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 www.ipwso.org or email the IPWSO
Executive Director, Giorgio Fornasier at:
(Note: Internationally, the word organization is usually spelled