1. Home
  2.  » About Us

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 120 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.


large group of people stood on a red stage

Our Trustees, Boards and Staff

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

toddler on red tricycle

Our History

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

lady reading display boards

Our Vision and Strategy

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

man in blue shirt at a laptop

Contact Us

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

lady on red cinema seating reading a report

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.  

Trustees 2019 to 2022

Our Structure

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

people talking

Reporting to our Members

How are Trustees report on the work of IPWSO to our membership.

Image of a leaflet

IPWSO leaflet

An overview of our work and the support we provide.


I Say, Me Too

Watch our special video celebrating the lives of people with PWS.

Our Memberships

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

Eurordis logo
PWS Clinical Trial Consortium logo
Global Genes RARE Foundation logo
Bond logo
HIFA logo
Rare Disease Day logo
Bond logo
NORD logo
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.

three adults and a child smiling

Information for

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

One man one lady at conference

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