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…following article. Driscoll DJ, Miller JL, Cassidy SB. Prader-Willi Syndrome. [Updated 2023 Mar 9]. In: Adam MP, Mirzaa GM, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2023. In particular, Figure 1 shows the comprehensive testing strategy to diagnose Prader-Willi syndrome and to establish the genetic mechanism. Guides for Doctors: Consensus Documents An overview of the most common and serious medical issues affecting people with PWS and to provide a…

…PWS. Boundaries keep us all “on the same page”. Let’s remember how people with PWS think… For most people with PWS, there exists constant, life-long anxiety from choices to be made, the things they hear and see, the speed at which decisions have to be made, the constant drive to eat and in many cases, the desire to be “the same” as others. As well, most people with PWS are concrete thinkers! The words you…

…and working. For 20 years the institution has offered a special treatment for people with Prader-Willi Syndrome. Since this time there is cooperation with the Zentrum für Neuropsychologie – Trier and the Catholic University of Eichstätt-Ingolstadt for research on the subject of Prader-Willi Syndrome. IPWSO Board: Co-opted Board member, June 2011. Professional Providers & Caregivers’ Advisory Board: Board member. Organizer of the International PPCB Conferences 2022 in Limerick, 2018 in Munich, 2012 in Wildbad Kreuth,…

…to redirect to a safe topic that everyone knows is true, like “Tell me about your sports memorabilia collection” or “Tell me about the first time that you went to a rugby game?” Or, if in a residential or school environment, teach staff an intervention “That’s an interesting story, but I’ll have to check with your mom.” or, “It must make you feel important to think that you’re related to a sports star.” It’s not…

…been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada, Cuba and most recently Ireland. In 2025 we are delighted to be returning to the USA. If your association is interested in hosting a future conference do get in touch. < Back to News & Events 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…

The Jean Phillips-Martinsson Fund In 2020 and 2021, Jean Phillips-Martinsson, IPWSO’s founder and Honorary President, presented substantial and very generous donations to IPWSO in memory of her son, Anders, and her husband, Sven.   Jean Phillips-Martinsson Jean’s son, Anders (top picture with Jean on the right), who was diagnosed with PWS at the age of 14 in Sweden, died unexpectedly in July 2019 at the age of 49. Jean’s husband, Sven, died 11 years previously….