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Education and Transition

Sep 15, 2020

…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 for Professional Caregivers Sharing international knowledge among professional service providers throughout the world. What is PWS? Translated Guides Find support in my country…

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Planning for change. Exciting opportunities!  

Jun 24, 2024

…is for families and for people with PWS – this was an opportunity for those providing such support to step back and reflect on what they do and how they do it. The Professional Providers and Caregivers Board chaired by Lynn Garrick are to be congratulated on the conference and for the community spirit that was so evident. This is my final year as President of IPWSO and in June 2025 I will hand over…

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After the Diagnosis, Relief and Acceptance

May 3, 2023

…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 for Professional Caregivers Sharing international knowledge among professional service providers throughout the world. PWSA | USA Medical Alerts Medical Alerts in your language Consensus Documents…

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Videos

Oct 11, 2022

…Information 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 for Professional Caregivers Sharing international knowledge among…

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The best job in the world!

Jun 24, 2024

…a country where such services are available. Throughout his life Louis benefited from expertise that was developed through international collaborations. The growth hormone treatment he has been receiving since childhood was made available for people with PWS following research in many countries. Practices around sleep studies, scoliosis treatment, guidance on how to manage hyperphagia, and best practices in social care all came about as a result of combined efforts by people from different countries. IPWSO…

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What is the treatment for Prader-Willi syndrome?

Aug 24, 2020

This is one of the most common questions asked particularly by new parents and family members of a new-born baby or child with PWS. The syndrome is rare and in many parts of the world there is limited access to support and information. Most people, including many physicians and caregivers, are not familiar with this potentially very serious condition. An early diagnosis of PWS is very important and allows families to learn what to expect…

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Supporting PWS events and projects in 2023

May 22, 2023

…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 for Professional Caregivers Sharing international knowledge among professional service providers throughout the world. PWSA | USA Medical Alerts Medical Alerts in your language Consensus Documents…

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Do you want to organise a PWS event in your country?

Oct 2, 2023

…little awareness of PWS. Applications will be assessed in terms of: applicants’ past experience of supporting people with PWS; applicants plans to continue to support people with PWS after the workshop/conference concludes; the reasonableness of the amount claimed; the importance of providing support in this country/region; the number of people expected to benefit; the consideration, where reasonable and possible, of reducing the environmental impact of the conference/workshop. The closing date is 31 July 2024.  …

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Semaglutide trial results

Feb 11, 2021

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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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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One man one lady at conference

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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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. 

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