We are an international non-profit support group for all countries where there is even just one person with Prader-Willi syndrome!

As an international umbrella organisation we bring together the national Prader-Willi associations, and for countries where there are no formal associations, we support medical and parent delegates as part of our global community.  IPWSO has contacts in over 100 countries, and is a world-wide parent-led support organisation. One of our key projects is to offer free diagnosis for PWS in countries where this is not available.

Creating a

Global PWS


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.

About us

Our 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 Trustees, and has  three advisory boards and three part-time office staff. IPWSO is politically neutral, with no discrimination as to race, sex or religion. 

> Board Members

> Advisers

> Delegates

> Early History of IPWSO

> IPWSO abides by its Statutes

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.

> Support us

> Donate

> Become a member

> Country Members

> Annual Reports

Our Memberships

IPWSO is proud to be a member of the following organisations:

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Salisbury House
Station Road
Cambridge CB1 2LA

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Registered as a charity in England & Wales, charity no. 1182873