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PWS Growth Charts

Sep 15, 2020

…the world could exchange information and support and have a united global voice under one umbrella. Information for Families Find useful guides, research and information to help families manage PWS. Information for Medical Professionals The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS. Information for Caregivers Sharing international knowledge among professional service providers throughout the world. What is PWS? Translated Guides Find support in my country…

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Could your PWS association host the IPWSO conference in 2025?

Dec 8, 2021

Has your PWS Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada and most recently Cuba. Ireland will host in 2022, maybe you could host in 2025? The main aim of the conference is for parents, scientists, professional caregivers and people with PWS to share information, meet others, and learn about the latest research and management techniques. While…

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Mark Lister

Feb 19, 2021

Member of the Advisory Group on “Research on specialist services for people with PWS”. Mark Lister is a Board Certified Assistant Behaviour Analyst who has 30 years of experience working with individuals with Prader-Willi syndrome, designing and managing, both residential and behaviour management programs. Mark was one of the founders of the Arc of Alachua County’s PWS residential program in Florida, USA. Currently the Arc is serving 65 individuals with PWS and is the only…

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Jean Phillips-Martinsson

Nov 12, 2020

…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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Could your country host IPWSO 2025?

Jul 12, 2022

The General Assembly of IPWSO has agreed to extend the bidding period for potential hosts to submit proposals to hold the 12th International Prader-Willi Syndrome Organisation conference in 2025. This is an exciting opportunity to bring international speakers and delegates to your country. To raise awareness, reach new families and share important research and developments in the support and treatment of people with PWS. The new deadline for proposals is 31 January 2023. If you…

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Endocrinology and Prader-Willi syndrome

Sep 22, 2022

We were delighted to jointly host a webinar on 8th September 2022 with the African Society for Paediatric and Adolescent Endocrinology. We welcomed 50 participants from around the continent of Africa (and beyond) to a webinar to discuss the endocrinology of Prader-Willi syndrome and some of the common issues and challenges faced by a person with Prader-Willi syndrome. The meeting was opened by Professor Tony Holland, President of IPWSO and Professor Suzanne Sap, President of…

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Damien Jones

Oct 23, 2020

…Interaction Disability Services (Interaction) since 2006. Interaction established Australia’s first accommodation model specifically for adults with PWS in 1992 and now operates a number of PWS houses. Having worked at multiple levels, supporting people with PWS, Damien brings a unique perspective and insight into their needs. Damien has delivered training and numerous workshops on PWS and has contributed to IPWSO’s Famcare articles. Damien will focus on the social aspects of ageing in people with PWS….

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Dan Driscoll

Oct 23, 2020

Chair, Clinical and Scientific Advisory Board University of Florida Health Sciences Center Div. Genetics / Dept. of Pediatrics Gainesville, FL  U.S.A….

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Maria Libura

Oct 23, 2020

…with this syndrome. She is the Head of Medical Training and Simulation Center at Medical College of University of Warmia and Mazury in Olsztyn, engaged in teaching clinical communication. She is also a vice-president of the Polish Society for Medical Communication, a founding member of Polish Personalized Medicine Coalition, as well as an expert of the Jagiellonian Club Analytical Center in the field of health and social care. Maria was an IPWSO Trustee from 2019-2022….

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Quick links

three adults and a child smiling

Information for
Families

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

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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.

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young child in a yellow dinosaur jumper

What is PWS?

Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome. 

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