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…or who are interested in developing associations – parents and professionals. Starts: Tuesday 1 December 2020 Format: Online using Zoom Video Conferencing Duration: 10 sessions each lasting 90 minutes Frequency: To be determined by participants Numbers: Restricted to enable maximum participation Attendance: …
…donation. < Back to How we can help 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 global voice under one umbrella. Information for Families Find useful guides, research and information to help families manage PWS. Information for Medical Professionals The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS. Information…
…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…
…country? 27 July 2020 Tony Holland, IPWSO President, writes about Universal Health Coverage (UHC) and his personal experience in the UK: The COVID-19 pandemic has highlighted the importance of having access to medical care that is affordable. This is particularly important for people with rare disorders, such as … Read More Early results from IPWSO’s PWS and COVID-19 survey 8 July 2020 Shortly after COVID-19 had been declared a pandemic IPWSO set up a survey…
…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…
…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…
…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…
…MD PhD (Chair); Theresa Strong, PhD (Co-Chair); Ann Scheimann, MD MBA; Charlotte Höybye, MD PhD; Anthony Holland, CBE MD; Jim Resnick, PhD and Nora McNairney, BSc (Hons) Dip RSA. Keynote Speakers Marnie E Blewitt, PhD Presenting on: “Epigenetic Activation of the PWS Locus as a Potential Therapeutic Approach”. Read more Jeffrey M Friedman, MD PhD Presenting on: “Obesity, Causes and Treatment: The End of the Beginning”. Read more Anthony J Holland, MD Presenting on: “Maintaining…
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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.