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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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Dan Driscoll

Chair, Clinical and Scientific Advisory Board University of Florida Health Sciences Center Div. Genetics / Dept. of Pediatrics Gainesville, FL  U.S.A….

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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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PWS Associations

…Bolivia: SWP Bolivia Brazil: Associação Brasileira da Síndrome de Prader-Willi Chile: Asociación Nacional Síndrome Prader-Willi Chile​ Colombia: Asociación Colombiana Síndrome de Prader-Willi Australia: Prader-Willi Syndrome Australia New Zealand​​: Prader-Willi Syndrome Association NZ We have contacts in many countries and regions, contact us for the details: Albania, Algeria, Armenia, Bahrain, Bangladesh, Belarus, Botswana, Bosnia and Herzegovina, Cameroon, Côte d’Ivoire, Croatia, Cuba, Cypress, Ecuador, Egypt, El Salvador, Georgia, Ghana, Guatemala, Honduras, Iceland, Indonesia, Iran, Jamaica, Jordan, Kazakhistan,…

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IPWSO Delegates

…any travel, but if circumstances allow for a travel grant, any Delegate is able to apply. (Grants are well advertised beforehand.) Professional Delegates are the point of contact that IPWSO – and IPWSO’s Clinical and Scientific Advisory Board – uses when distributing scientific information, or requesting help or advice for a patient in that country, or referring contacts. Professional Delegates do not have voting rights, but may hold their country’s Proxy vote and may attend…

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Managing challenging behaviour

…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 service providers throughout the world….

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Venue Information

…of funds, IPWSO offers scholarships to attend our conferences. Contact us to keep up to date with conferences, workshops, meetings, and scholarship grants. Future conferences Has your Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada, Cuba and most recently Ireland. In 2025 we are delighted to be returning to the USA. If your association is interested in…

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Adult Life

…This 30 page document is in 10 chapters and makes up a “personal history” of the person with PWS. Invaluable for caregivers, support workers, teachers and service providers. The document has been adapted from the original by Kate Beaver (PWSA USA) for IPWSO use. It is a generic document and can be changed and altered according to individual needs. < Back to Information for Families International Community IPWSO was established so that PWS associations, families,…

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Friends of IPWSO

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

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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.