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Abrazos que hablan, Un Prader-Willi en la familia: reseña del libro

…her son Edu was affected by the syndrome. The work can be purchased at the Documenta bookstore in Barcelona, ​​in the physical and online store. The Catalan Prader-Willi Syndrome Association presents Anna Ripoll’s first work: Hugs that speak. A person with Prader-Willi in the family. The book explains the life of Edu, a boy with a rare disease called Prader-Willi syndrome (PWS), caused by the loss of a fragment of chromosome 15 that causes alterations…

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Behind the Booth

materials and other supports. Some reported that in their countries PWS is typically only suspected or tested for when people are obese. All of the costs associated with IPWSO’s participation in ESPE 2019, as well as the costs of IPWSO’s free diagnostic testing service in 2019, have been covered by a generous grant from Soleno Therapeutics, which is currently conducting Phase 3 trials of Diazoxide Choline Controlled Release (DCCR) for the treatment of Prader-Willi syndrome….

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Translated Guides

…with PWS / PWSを持つ人にとっての運動 Promoting positive behaviour / 一定のルールを一貫して導入することの有用性 Transition in people with PWS / 移行期 Meeting with professionals / 専門家との面談に関するのガイダンス プラダー・ウィリー症候群と診断されたお子さんのご両親のために書かれたものです。 Guide to health: checklist / 「健康」チェックリスト Guide to Basics of a Healthy Adult Life / PWS を持つ成人の健康的な生活に欠かせないポイントについて Guide to confabulation (story telling in PWS) / PWS を持つ人の作話 Guide to coping with change in PWS / PWS を持つ人の「変更への対応」 Guide to “I want the same” / PWS を持つ人に、「どうしてわたしは他の人と同じものをもらっては(同じことをして は)いけないの?」と聞かれたら、あなたはどう答えますか? • Medical Alerts Handbook / Medicīniski…

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Personal Care for People with PWS

…overweight can cause dilatation of blood vessels and lead to a drop in blood pressure. Falling asleep in a bath is a high risk for someone with PWS, especially if they have sleep apnoea. Make sure that all areas are properly cleaned including; face; ears; neck; underarms; chest; back; bottom; legs; arms; between the buttocks; feet; between the toes and don’t let them miss any of those hard to reach places. (A body chart on…

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IPWSO Sponsors 2024

for independence, self-worth, and happiness for individuals with complex special needs. Bronze Sponsor Prader-Willi-Syndrom Vereinigung Deutschland e.V. The Prader-Willi-Syndrom Vereinigung Deutschland e.V. (PWSVD) is an association of individuals with PWS (Prader-Willi Syndrome) and their families, with over 750 members nationwide. Founded in November 1991, our mission is to raise awareness in the public and promote understanding of PWS and its treatment options. We provide support to those seeking guidance in all aspects of life and…

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Semaglutide trial results

A study published in the New England Journal of Medicine has shown exciting results from trials of a drug called semaglutide on people with severe obesity. The trial showed that people lost an average of 15kg when receiving semaglutide compared with only 2.6kg in those receiving the placebo. 32% of people taking the drug in the trial lost as much as a fifth of their body weight, compared with fewer than 2% on the placebo…

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Setting Boundaries

…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…

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Vanja Holm’s contribution to our knowledge of PWS

Photo above (left to right): Hans Zellweger, a child neurologist from Iowa who worked in the field and was the thesis supervisor for the PWS research of Louise Greenswag, Gene and Fausta Deterling, from Minnesota, early organizers of what became PWSA (USA), Andrea Prader and Sam Beltran, an early President of PWSA (USA). Front (in blue dress): Vanja Holm. Photo taken in July 1984. Dr. Suzanne Cassidy, past President of IPWSO, outlines the impact of…

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Managing a Meltdown

…hurt himself, but without him knowing we are there. Teach coping skills every day! The best way to learn to manage feelings of frustration is to practise often, when anxiety is minimal. Over time, these skills will be remembered during episodes of increasing anxiety. Some effective strategies are: slow breathing, counting, using stress relief objects eg music, sensory balls and communication. Although meltdowns occur commonly in people with PWS, by practising successful management strategies the…

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Quick links

three adults and a child smiling

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.

young child in a yellow dinosaur jumper

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.