Our Structure
IPWSO is a truly international and parent-led organisation with Board members and volunteers from around the world. Find out more about how we are run and the people involved in our work.
Who makes decisions?
The General Assembly
The central decision-making body of IPWSO is the General Assembly which meets every three years during the international conference and may meet more often for extraordinary meetings. The General Assembly is constituted of the representatives of the IPWSO member associations and they vote on the membership of the Board of Trustees, any changes to the constitution and the location of the next international conference.
The Board of Trustees
The Board of Trustees is made up of a maximum of ten elected members and two co-opted members. It holds monthly meetings which are also attended by the staff and chairs of the three expert Boards. The Trustees are responsible for the strategic direction of the organisation as well as its financial stability and adherence to the law.
Standing Committees and Project Committees
Reporting into the Board are various committees including the three expert Boards: the Clinical and Scientific Advisory Board, the Professional Providers and Caregivers Board and the Famcare Board, membership of these Boards can be viewed in the section on Our People. There are also a number of committees which report to the Board on particular projects and other aspects of the organisation’s work.
Honorary President and our Advisers
IPWSO also relies on the advice of its Honorary President, IPWSO Founder Jean Phillips-Martinsson and a further group of advisers who provide guidance based on their specialist knowledge.
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International Community
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
Free Diagnosis
If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing.
Find support in my country
We have contacts in many countries and regions around the world.