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Growth Hormone Therapy

…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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Our Structure

…strategic direction of the organisation as well as its financial stability and adherence to the law. Standing Committees and Project Committees Reporting into the Board are various committees including the three expert Boards: the Clinical and Scientific Advisory Board, the Professional Providers and Caregivers Board and the Famcare Board, membership of these Boards can be viewed in the section on Our People. There are also a number of committees which report to the Board on…

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Give in Memory

…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 service providers throughout the world. What is PWS? Translated Guides Find support in…

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Project ECHO

…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 Professional Caregivers…

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ASPAE 2024 Travel Fellowships

…applicants’ experience of supporting people with PWS; applicants’ plans to continue to support people with PWS after the workshop/conference concludes; importance of providing support in this country/region. The closing date for the receipt of applications is 17:00 (UK time) on 2 February 2024. The successful applicant/s will be chosen by the IPWSO Grant Committee whose decision will be final. Both successful and unsuccessful applicants will be informed by IPWSO in collaboration with ASPAE as early…

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Reporting to our members

…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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Our Vision and Strategy

…reading our current Strategy and our latest Annual Report.   Our Vision ​A world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. Our Mission ​To unite the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with…

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Diagnosis: giving access to the best start in life

My name is Nikolinka Yordanova. I am a pediatric endocrinologist and core specialist of our PWS Multidisciplinary team at the First Pediatric Clinic, University Hospital “Sveta Marina“ in Varna, Bulgaria. The head of our Department, Prof. Violeta Iotova has collaborated with the BIRD Foundation since the early 2000s. There are currently 20 patients in our center (16 children and four adults), half of them are confirmed through testing at BIRD, which is funded by IPWSO….

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Please help Huis Henri survive!

…new residents and derailed all our fundraising initiatives. We are hoping for a miracle to make us survive 2020 and then tackle 2021 with new vigor, passion and love. Please watch Liezl’s 4 minute video and if you feel that you can help in any way, please make contact via +27 72 243 5251 or huishenri@023.co.za or visit www.henriwarnichfoundation.co.za for more information. Please share to help us spread the message. < Back to Our Blogs…

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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.