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Summit Meetings

Summit Meetings Next Summit Meeting Wednesday 13 November, 2024 The next IPWSO Summit Meeting is scheduled for Wednesday 13 November. Details will be announced soon. Please check back for more information and to register to attend. IPWSO Summit Meetings provide an international online forum at which key issues of relevance to people with PWS and their families, and our international community, will be discussed. People living with PWS and their families, clinicians, researchers, professional caregivers,…

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Conference Programme

…leader, Stiftung Arkadis, Switzerland 11:45 – 12:00 PWS Competence Center Austria Janine Sinner, Team Leader, Caritas Oberösterreich, Austria 12:00 – 13:30 Lunch Break 13:30 – 14:15 Panel discussion: Self-determination, self-control: Opportunities and limitations Lee Chamberlain, VP & Chief Strategy Officer, Latham Centers, Inc., USA | Maria Kirby, Clinical Services Manager, Resilience Healthcare, Ireland | Fred Nikolai, Chairman Prader-Willi Stichting, The Netherlands | Michelle Torbert, President, Friends of IPWSO (USA), USA Moderated by: Hubert Soyer, Psychologist,…

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Research and Clinical Trials Update Meetings

…the presenters and to everyone who attended. The presentations are shared below. The first IPWSO Research and Clinical Trials meeting took place on September 7, 2023. View the video presentations from this meeting here. In accordance with our Policy and Code of Practice, IPWSO does not promote individual trials or the use of specific medications. Make a donation ​We cannot provide these services without your support. Please consider making a donation. < Back to News…

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Privacy Policy

…collect?The personal information we collect from you may include: your name, address, telephone number, email, contact preferences, date of birth, age, gender, nationality, employment and your interest in PWS. We may collect information when you subscribe to our emails, send us emails, write to use, contact us at events, use our social media sites and when you donate. ​How do we use your information? ​We use your information to pursue the legitimate interests of our…

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Planning for change. Exciting opportunities!  

…after nine years in the post. I shall undoubtedly miss it, but change is a good thing, and fresh ideas are to be welcomed. Attending the PPCB meeting was an occasion for reflecting on the wider work of IPWSO – the various committees, the volunteers, and the excellence of those who run the organisation – Marguerite and her team. Under Marguerite’s leadership, we have made great progress. Marguerite has worked tirelessly to deliver the vision…

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What are the symptoms of Prader Willi syndrome?

…as a narrow forehead and almond shaped eyes, weak muscles, floppiness and S-shaped curvature of the spine can occur. – Growth Deficiency and short stature – Incomplete Sexual Development – Intellectual & Leaning Disability – Speech & Language Difficulties – Balance and Coordination – Scratching and Skin picking – An excessive appetite and overeating, often leading to obesity – Behavioural Difficulties such as bad tempers, mood swings, addictive & repetitive personalities Read more details for

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Membership

…PWS Associations with less than 50 members €100 PWS Associations with 50-99 members €200 PWS Associations with 100 – 299 members €500 PWS Associations with 300 – 499 members €1,000 PWS Associations with 500+ members In regions where there is no constituted PWS Association, a Professional Delegate and/or Parent Delegate may join the IPWSO Network directly. This entitles these delegates to receive information, support, and educational knowledge from IPWSO. Being part of our Network does…

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Test IPWSO Conference

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Supporting PWS events and projects in 2023

…in collaboration with the PWS Malaysia Association. Pakistan: Aga Khan University Hospital, Karachi Sabeen Iqbal, mother of a 32-year-old woman with PWS, and Salman Kirmani, Geneticist and Paediatric Endocrinologist, will work together to deliver a conference in their home country of Pakistan. This in-person event, originally planned for 2022, was postponed due to COVID-19. Sabeen and Salman plan to deliver a conference to help educate healthcare professionals about the needs of people with PWS. Unfortunately,…

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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.