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Neil Gumley

Oct 23, 2020

Service Manager PWS specific facility in Melbourne Australia Neil gained a Science/Disability Degree from RMIT University in Melbourne Australia in 2010 while at the same time working at the Department of Health and Human Services specialising in the management of Complex Behavioural Accommodation facilities. In 2014 Neil moved into the Operation Managers role where he was tasked with the Establishment of the First PWS specific accommodation in Melbourne Australia. The facility has now been running successfully…

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Harold van Bosse

Nov 17, 2020

Orthopaedic Surgeon Also on the board of directors for Arthrogryposis Multiplex Congenita Support, Inc. and A Leg to Stand On, he is a member of the PWSA (USA) Clinical Advisory board. He is also an associate professor of orthopaedics at Temple University….

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Marcello Schutzer

Oct 23, 2020

Adviser Marcello lives in Atlanta with his wife Andrea and his 2 daughters: Giulia, born in 2003 and diagnosed with PWS shortly after birth; and Nina, born in 2008. Marcello has more than 30 years of experience in senior executive finance roles in leading multinational companies and holds a degree in business administration from FGV in Brazil and an MBA with emphasis in Corporate Strategy and Finance from London Business School. Marcello has served as…

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Leopold Curfs

Nov 17, 2020

Dept. of Clinical Genetics, University Maastricht/Academic Hospital, Maastricht, The Netherlands…

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Suzanne Cassidy

Nov 17, 2020

Medical genetics doctor in Sausalito, California and is affiliated with UCSF Medical Center. A founding member of IPWSO and Past President, Susie is also a serving board member of PWSA USA…

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IPWSO’s General Assembly 2022

Aug 8, 2022

We held our General Assembly on the final day of our conference, 10th July 2022 to elect our new Board and make a decision about the next conference….

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Gary Brennan

Feb 5, 2021

Gary is a member of the planning committee for the 2022 international conference. He joined PWSAI in May 2019 as the association’s first employee and is currently the National Development Manager. He came to the role with twelve years’ experience in the social care disability sector, eight of which were in residential care supporting adults with Prader-Willi syndrome in a variety of roles from care worker to line manager and subject matter expert in managing…

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María Elvira Garcia Ronderos

Nov 28, 2022

…wrote the book “The Smile Thief”, published in 2017, which is the testimony of a family with a special child. She has been married for over 40 years to Mauricio Sánchez with whom she has four children; the youngest, Carlos Iván, has Prader-Willi syndrome. She has been President of the Asociación Colombiana Síndrome de Prader-Willi since 2019. María was part of the organising committee of international symposiums on PWS in Colombia in 2019 and 2021….

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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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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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