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About Us

We are an international non-profit membership organisation supporting national Prader-Willi syndrome associations, as well as people with PWS, their families and the professionals who work with them.

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.

 

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Our Trustees, Boards and Staff

Find out more about the people who advise and guide our work.

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Our History

Established in 1991, we are proud of our history, find out more here!

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Our Vision and Strategy

Information about what motivates our work and how we will achieve our goals.

Trustees 2019 to 2022

Our Structure

Find out about how IPWSO functions, our committees and how we make decisions.

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Annual Reports

Read our latest report to find out what we have been working on over the last 12 months and how we are funded.

Jean and Anders

Jean Phillips-Martinsson Fund

Jean Phillips-Martinsson’s gift to the work of IPWSO in memory of her son, Anders, and her husband, Sven.  

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Contact Us

Get in touch with us if you have a question or would like to share something with us!

Our Memberships

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

Global Genes RARE Foundation logo
Eurordis logo
PWS Clinical Trial Consortium logo
Bond logo
HIFA logo
Rare Disease Day logo
Bond logo
Rare Revolution Magazine
Any questions? Get in touch with us. Please enter your name and email address below.

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.

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Information for
Families

Find useful guides, research and information to help families manage PWS.

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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?

Translated Guides

Find support in my country