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…This is why children with PWS appear to be in a ‘blind rage” during the tantrum; they are literally behaving in survival mode, acting without thinking. In PWS it takes a while for the brain to “reboot.” After they recover, they may act as if nothing has happened (brain reboot), and they may or may not remember what has occurred. A tantrum is a learning experience for the caregiver. The keys to successful behavioral…
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…
…Foundation for Prader Willi Research, PWS Association-Georgia, Physicians Care Clinic, NeuroScience Foundation, Association for Quality Imaging and The Texas IDTF Association. He graduated from Auburn University’s business school in 1991. In his off time Scott enjoys spending time with his family at the lake, hunting, fishing, golfing and working on a new PWS Foundation known as C-15 Foundation dedicated to a Work, Live, Play and Research campus. Scott has been an IPWSO Trustee since 2022….
…200 participants from 12 countries focusing on building a supportive allied health network including funding and sponsorship as well. In the following year, Lantz took the role as Head of Marketing of the 5th Asia-Pacific PWS Virtual Conference in 2021, jointly organized by four national PWS Associations of Malaysia, Australia, New Zealand and Thailand respectively. Lantz has operated a strategic marketing consultancy company since the mid 90’s that collaborates with international universities in the areas…
…– Trier and the Catholic University of Eichstätt-Ingolstadt for research on the subject of Prader-Willi syndrome. IPWSO Board: Board member from June 2011 till November 2019. Professional Providers & Caregivers’ Advisory Board: Board member. Organizer of the International PPCB Conferences 2018 in Munich, 2012 in Wildbad Kreuth, 2009 and 2008 in Herne, Germany together with Dr. Norbert Hödebeck-Stuntebeck and the Board members of PPCB. Managing director in the non-profit company Prader-Willi-Syndrom Institut Deutschland gGmbH (PWS-ID)….
Parent of an adult daughter, Jackie is a past IPWSO Board member and has worked with PWSA UK for over 20 years, specialising in writing and producing information, including the UK PWS Journey, and website articles for parents, people with PWS and professional carers….
Communication & Membership Manager Agnes worked at Cambridge University, UK, alongside Tony Holland, and joined IPWSO initially to organise the 2019 IPWSO Conference in Cuba. She has now joined the IPWSO staff as Communication & Membership Manager. Her background is in communications and campaigns in the health and disability sectors….
Rare Diseases International (RDI) have today published their statement on COVID-19 and the impact on the lives of people with rare disorders and the response that is needed from Governments. IPWSO, as a member of RDI, recognises that people with rare disorders, including people with PWS, are at risk during this time of the COVID-19 pandemic, not just because of the virus itself but also because services to families and to people with PWS may…
…#UHC4RareDiseases Campaign There is also a “Group of Friends of UHC”, a platform for Member States to advance Universal Health Coverage within the UN system. The Group is co-convened by Japan, Brazil, France, Ghana, Hungary, South Africa and Thailand. For a little background, please read the concept note on the Group of Friends of UHC. The meeting also shared information on the High-level Meeting on UHC held at the United Nations on 23rd September 2019….
Find useful guides, research and information to help families manage PWS.
The latest medical and scientific research and information, plus guides into common medical issues affecting people with 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.