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 organisation.  We also offer free diagnosis for PWS in countries where this is not available


We hold a three-yearly International PWS Conference, hosted by different nations; the 10th International PWS Organisation was held in Havana, Cuba from 13-17 November 2019.


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  three advisory boards.   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

IPWSO Early History

IPWSO's early days have been recorded for posterity by Jean Phillips-Martinsson

IPWSO Boards

Tony Holland
Dan Driscoll
Amalia Balart


Presidents of IPWSO are elected at our General Assembly and stand for a 3+3 year term.

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Head of Clinical & Scientific Advisory Board 

Head of Family Care

The Head of CSAB is selected by the IPWSO Board.  CSAB provides an open service to parents and professionals needing medical or clinical advice.  

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The Head of Famcare is selected from the Board of Directors and solicits topics from parents caring for adults with PWS at home.  These "Guides" are translated into different languages.

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Norbert Hödebeck-Stuntebeck 

Head of Professional Provider, Caregiver Board

The Head of the PPCB is selected by the IPWSO Board and retains an open position.  This board runs conferences for professional caregivers, provides support and information for residential care of those with PWS.

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Douglas House,

18b Trumpington Road, Cambridge, CB2 8AH, 

United Kingdom 


IPWSO, Douglas House, 18b Trumpington Road,

Cambridge CB2 8AH, UK

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