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…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…
…in Africa and would like to get more involved in this work then do get in contact with us. There are also various resources that may be of interest: PWS information in Arabic, French and other languages: https://ipwso.org/pws-information/translated-guides/ PWS information in English: https://ipwso.org/pws-information/ IPWSO’s free diagnosis service: https://ipwso.org/how-we-can-help/free-diagnosis/ PWS Support Group, South Africa run whatsapp groups for families and would be happy to add people from other African countries: http://www.praderwilli.org.za/ IPWSO’s advice line: office@ipwso.org…
…a young age including what your child eats, when they eat and how much they eat, will enable them to manage a healthy weight over time. When establishing a plan of what and how much your child eats, it is advised to consider the following: · low in fat, · low in energy/kilojoules (kJ), · tailored to the child’s needs to enable growth in height, · healthy – to ensure nutrient requirements are met, ·…
…support system for your child and family 🎙️ Meet Our Expert Speakers 👩⚕️ Dr. Constanze Lämmer Senior Physician, Department of Endocrinology and Diabetology, KJF Klinikum Josefinum, Augsburg, Germany Dr. Lämmer brings over two decades of experience in pediatric endocrinology, nutrition, and rare disease management. A pioneer in PWS care in Germany, she established the award-winning Hildesheim Program, serving over 300 patients with PWS. She is now building the multidisciplinary Prader-Willi Centre at Josefinum in Augsburg,…
…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….
…them for having PWS. Their environment is key. Starvation Syndrome To understand the importance of this drive to eat, try to look at PWS as a ‘starvation’ syndrome (behaving as if you were starving) rather than an over-eating one. Because of the dysfunction in the hypothalamus, there is no on/off mechanism that tells the brain, “I’ve eaten enough”. What happens instead is that the brain (hypothalus) keeps telling the body, “you’re starving, you need food”,…
Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from July to September 2020….
…She is currently the PWS Regional Operations Manager for Resilience Healthcare. She has helped open three PWS-specific residential services. Additionally, she supported the launch a National PWS-specific Respite service in 2024. Lynsey continues to learn from the amazing individuals she supports and looks forward to further developing PWS-specific services. Hubert Soyer Background: Ph.D., Psychology and Pedagogics, Catholic University of EichstättIngolstadt, 2003. Dissertation: Studies on social and therapeutic pedagogy of Prader-Willi Syndrome. Diploma: Psychology, Catholic University…
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.