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…with Disability (UN CPRD), that are clear – children have a right to education and countries have a duty to ensure that education is available to all Having national laws stating this is essential as these laws establish the right, however, the questions that follow are: How should the special needs of people with disabilities in general and PWS specifically be met? The second question is: What to do when a school placement breaks down?…
Verena Gutmann, chair of our Famcare Committee introduces our latest publication: In our newest Famcare article you can read about the importance of a well-structured day for adults with PWS and the main features to be considered when embarking on such activities. We know there are different possibilities for work and occupation in countries worldwide; we also know that people with PWS have a range of abilities as well as needs to consider. Many people…
…to submit proposals to hold the 12th International Prader-Willi Syndrome Organisation conference in 2025. This is an exciting opportunity to bring international speakers and delegates to your country. To raise awareness, reach new families and share important research and developments in the support and treatment of people with PWS. The new deadline for proposals is 31 January 2023. If you have any questions about the process please contact us and we can arrange a meeting….
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….
…event. Caregivers’ Forum A place for professional PWS caregivers worldwide to share practice-driven knowledge, information and support. Family Meetings Online meetings on topics relevant to families of people with PWS. Research and Clinical Trials Update Meetings Updates from companies who have ongoing, planned and recently concluded clinical trials. Summit Meetings Online meetings where key issues of relevance to people with PWS and their families, are discussed. Our Blog Stories and views from around the world…
…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…
Adviser Maria has been, for the past 15 years, the president of the Polish Prader-Willi Association. During this time, the association successfully cooperated with the Polish Ministry of Health and the Polish Society for Paediatric Endocrinology to establish the National PWS Treatment Programme, which was subsequently extended to adult care. She has a first-hand experience with living with PWS, being a mother of two girls, one of whom is diagnosed with this syndrome. She is…
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….
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.