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Asia Pacific PWS conference – October 2021!

Aug 18, 2021

The PWS associations of Australia, New Zealand, Malaysia and Thailand have come together to present the 5th Asia Pacific Prader-Willi syndrome conference! The event will be hosted online from 29th to 31st October 2021. We are delighted to be involved in what promises to be an exciting and informative event for people with PWS, families, support agencies, residential providers, medical and allied health professionals, educators and their students. Registration is now open! Conference flyer International…

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Lesley Robertson

Oct 23, 2020

I have been fortunate to be able to advocate for PWS, supported by my husband Don and our family. I have been able to attend Conferences and keep up to date. I have been accepted by Doctors and Caregivers as an equal with lived knowledge of the syndrome. It is a lifelong commitment, with many difficulties and problems along the way, but as our other two children would say “what doesn’t break you makes you”….

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François Besnier

Oct 23, 2020

…a good illustration of a collaborative large project. I have set-up with my wife training sessions for caregivers, performing about 20 sessions per year. The death of my daughter left a terrible void in our life but my commitment to IPWSO is vital for me. She never gave-up, so I will keep going as long as I can. I now have three years’ experience as a Trustee with IPWSO and am very motivated to commit…

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Blind Rage

Dec 11, 2019

…will get back on track fairly quickly and resume their daily activities; they may or may not acknowledge their behavior.  ​ The cortex of the brain not only governs reward, but it is responsible for thinking and reasoning behavior.  Another part of the brain is involved in behaviors such as tantrums and shut downs.  The amygdala directs brain mechanisms associated with survival (fight, flight or freeze); it is responsible for emotional expression, aggression, and impulsivity. …

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Maithe Tauber

Nov 17, 2020

Professor of Pediatrics, University of Toulouse  She directs the Reference Centre for Prader-Willi syndrome in France and is the Chair of the Scientific Council of Prader-Willi France.  Her research includes oxytocin in PWS….

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Patrice Carroll

Oct 23, 2020

…Massachusetts, USA. Patrice received her MSW from Simmons College, Boston, MA 2008. Patrice is the co-chair of the PWSA USA professional providers advisory board and has been working with children and adults diagnosed with PWS since 2002. Patrice is a co-author of the book Living Healthy with Prader-Willi Syndrome.  In addition to her experience with developing person-centered vocational programming for people with PWS, she has specialized in the management of skin and rectal picking using intensive, non-contingent, sensory stimulation….

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Amalia Balart

Oct 23, 2020

…zones, each with a Coordinator that reports to the central Board. She is one of the authors of the book “Síndrome Prader-Willi Guía de Apoyo y Recetas para Celebrar de Manera Saludable”. She founded Corporación Señales, a non-profit organisation to provide schooling, training and labour opportunities for people with special needs. Amalia is mother to an adult woman with PWS. Amalia has been working closely with colleagues in Latin America through the Red de Especialistas…

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Larry Genstil

Nov 17, 2020

Psychologist Executive Director Genstil Institute of Human Behaviour Israel Larry is Founder and Executive Director of the Genstil Institute Hostel, Mevasseret Zion, Israel. Founded in 1991 the hostel is a large group home serving two populations, one of which is made up of adults with PWS. In addition, he is a Psychologist at the Multi-Disciplinary Clinic for People with PWS, Sha’are Zedek Medical Center, Jerusalem, Israel, where he has worked since 1996….

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Tomoko Iwasaki

Nov 17, 2020

Formerly an English teacher at a university but now working as a medical translator Tomoko works closely with PWSA Japan to translate or talk in public to distribute necessary information. Her daughter with PWS passed away (infant death), but Tomoko is still an active member of the PWS community….

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Quick links

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Information for
Families

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

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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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