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Honorary President and Founder


Jean Phillips-Martinsson

Founder and Honorary President

Jean is the parent founder of IPWSO, establishing the organisation in 1991 to increase cooperation and knowledge about PWS around the world. Jean served as IPWSO’s first President from 1991-1998 and she laid the foundations for everything that followed in IPWSO’s now 30+ year history. She has continued to be very active in the organisation and is a vocal supporter of international liaison between PWS associations.

Jean’s son Anders was diagnosed with PWS as a teenager, he sadly passed away in 2019. In 1986, two years after her son was diagnosed at the age of 14, she co-founded the Swedish Prader-Willi Association together with two other families. Jean lived in Sweden but retired to live in the UK.

Jean has written the first chapters of IPWSO’s history setting out the amazing journey that brought so many families and experts together from around the world. In 2020 Jean made a substantial donation to IPWSO enabling the setting up of the Jean Phillips-Martinsson Fund to continue and expand IPWSO’s work in line with our mission of uniting the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, national PWS associations, and professionals who work with IPWSO.

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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.

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