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Our History

IPWSO was founded in 1991 with the aim of bringing together expertise about PWS from around the world. Our founder Jean Phillips-Martinsson has written a full history of IPWSO’s early years. We have also summarised our history below. 



We host our 11th international conference in Limerick, Ireland. and elect new members to our Board. We record a series of videos at the conference to highlight some of the key issues affecting people with PWS.

Our Mental Health Network meets for the first time in person and publishes the first draft of their report.


We celebrate our 30th anniversary with a workshop and selection of new films. Our founder Jean Phillips-Martinsson joins members and supporters online to celebrate.

Project ECHO® is expanded and we support and publish new research in five peer-reviewed papers.


We launch Project ECHO® to strengthen the bonds between PWS associations and share knowledge using Zoom technology. We appoint Marguerite Hughes as our first Chief Executive Officer.

We unveil a new logo and website to help us reach many more families in need.


The 10th IPWSO conference is held in Havana, Cuba. This is IPWSO’s first conference in the Spanish speaking world and the first at which we have interpreters working. The conference was attended by 480 delegates from 43 countries (including 200 people from Cuba). IPWSO becomes a registered charity in the UK. Linda Thornton retires from IPWSO.


The Friends of IPWSO (USA) is formally established under the guidance of Joan Gardner and Dr Suzanne Cassidy.

Find out more on their website.


IPWSO celebrates its 25th birthday. The ninth IPWSO conference is held in Toronto, Canada. Professor Tony Holland (UK) takes over as President.


The eighth IPWSO conference is held in Cambridge, UK.


The seventh IPWSO conference is held in Taipei, Taiwan. Dr Suzanne Cassidy (USA) becomes IPWSO President.


The sixth IPWSO conference is held in Cluj-Napoca, Romania.


The fifth IPWSO conference is held in Christchurch, New Zealand.
Pam Eisen (USA) becomes President.


The fourth IPWSO conference is held in Minnesota, USA.


The third IPWSO conference is held in Lido de Jesolo, Italy. It is attended by 250 delegates from 24 countries. Following a competition between members an IPWSO logo is created, designed by Tiina Silvast, Chair of the Finnish PWSA. Giorgio Fornasier (Italy) is elected our new President.


IPWSO goes online with the creation of our first website.


The second IPWSO conference is held in Oslo, Norway. Despite floods and air strikes, 225 delegates from 24 countries turn up.


Linda Thornton, from New Zealand, offers to become editor of IPWSO’s newsletter for parents and suggests the name “Wavelength”. Under her editorship, it will soon become the mouthpiece for everyone involved in the management of PWS.


The first international Prader-Willi syndrome conference is held in the Netherlands bringing together 200 delegates from 22 countries. Prof. Prader (one of the authors who first described PWS in 1956), speaks at the conference. On 4th May the International Prader-Willi Syndrome Organisation is formed with Jean as our first President.


Jean makes contact with Dr Suzanne Cassidy from the USA and together they make plans to organise an international conference. They win support from NATO and the WHO.


Jean Phillips-Martinsson lives with her husband and son in Sweden. Following tests Anders is diagnosed with PWS at the age of 14. It is very rare and there is not much information available. Jean wants to find out more! She organises the creation of PWSA Sweden in 1986 and looks to countries overseas to share expertise.

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

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Information for Medical Professionals

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Sharing international knowledge among professional service providers throughout the world.

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