IPWSO is the international non-profit support group for all countries where there is even just one person with Prader-Willi Syndrome!  Our international umbrella supports all country PW Associations, and for all countries where there are no formal PW Associations, we support medical and parent delegates as part of our huge community.  IPWSO has 105 country members, and is a world-wide parent-led support organsation.

 

 

 

We provide support for families, information for medical and educational specialists, we translate material and offer links to other resources.

 

We have a Scientific & Medical Advisory Board for scientific and medical support.  Any questions, any difficulties, any challenges you may be facing, we can direct you to a specialist in that area.

 

We have a Professional Provider Board for all residential support.  The same applies - any questions, difficulties or challenges you (as a professional caregiver) might be facing, we can direct you to specialists for support and answers.

 

We have a Family Care support group (Famcare) which provides information and support family-to-family.  With the daily challenges that families face in caring for an adult with PWS within the home, you can be sure that there are other families around the world facing the same challenges.  Let's share your ideas, advice, and successes.

 

We proudly offer free diagnosis in countries where diagnosis for PWS is not offered.

 

We hold a three-yearly International PWS Conference, hosted by different nations; the 9th International PWS Organisation conference is to be held in Toronto, Canada and hosted by the Federation for PW Research and the Canadian PWS Associations.

 

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We recognise that every PWS 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.

 

How is IPWSO Funded?

IPWSO is supported financially by its members, by independent grants, and by private donations.  IPWSO also runs fundraising campaigns and relies on the charitable good heart of its members.

 

IPWSO  Mission

• 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 PWS 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.

• Through international conferences provide a forum for communication and collaboration about medical and scientific research advances, caregiver standards, and new therapies and insights for families.

 

IPWSO Management

IPWSO is run by a President and a Board of Directors, and has  a Scientific/Medical Advisory Board and a Professional Providers Advisory Board.  IPWSO is financed by subscriptions from member associations, donations, and grants.  IPWSO has two part-time office staff.  IPWSO is politically neutral, with no discrimination as to race, sex or religion.  IPWSO abides by its Statutes