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Use of Growth Hormone in Georgia: Joy for families!

We recently heard from our contact Zurab (father to Noe, pictured) in Georgia who reported the good news that the Georgian Ministry of Health has made the decision to provide free Growth Hormone Treatment to children with PWS. Zurab, along with other families, the Rare Disease Center and the Georgian PWS Association, had applied to the Ministry of Health many times for this treatment. The lack of funding has been a considerable source of frustration…

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Meaningful employment for people with PWS

…have started “home businesses” which seems to work well for them. When creating guidelines one needs to take into consideration that each person with PWS is unique and their needs, interests and capabilities can vary quite a bit. We’re greatful to everyone who took the time to respond to our survey. The Professional Providers and Caregivers Board looks forward to examining the issue further at future meetings, with the ultimate goal of providing evidence-based guidelines…

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IPWSO Delegates 2025

< 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 for

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Presentation of Bids for 13th IPWSO Conference 2028

…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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The best job in the world!

…PWS association, every research discussion, and every training programme has the ultimate goal of helping people with PWS and their families. And, in my privileged position, not only can I help advance this goal, but I also get to see first-hand the impact of IPWSO’s work. I feel certain that there are people with PWS alive today who, without IPWSO’s work, would not be here. And that there are many more whose lives, and those…

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Managing challenging behaviour

…available, and we hope those of you who were not able to attend will be able to watch them and to share with others who might also find them useful. “Thank you to all the speakers! Excellent and parent-focused presentations, we could learn a lot again. It is very important to educate families in time. With the right strategy, they adapt to challenges more easily. Thank you so much!” ~note from parent who attended. Read…

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Make a donation

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 professional…

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Staff

…arthritis. Since joining IPWSO in early 2021, Shelly has been responsible for overseeing IPWSO’s online event programme, along with coordinating workshops, meetings, and conferences in both virtual and in-person settings. Additionally, she provides support to several IPWSO Boards and Committees. Nora McNairney Project and Operations Manager Nora is based in Northern Ireland and has spent over 20 years working in membership-based organisations supporting various functions including operational, secretariat, policy, public engagement and continuous professional development….

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Anthony Holland

…he has undertaken extensive research, particularly into the hyperphagia and the behavioural and mental health problems commonly associated with having PWS. His research has been published in academic and practice-based journals and he has been involved in the preparation of guidance for IPWSO and PWSA UK. He has attended all of the IPWSO International conferences and was one of the organisers for the IPWSO conference held in Cambridge in 2012. In 2015 he was awarded…

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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.

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.

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.