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Behaviour and Mental Health

…with PWS Skin picking < Back to Information for Families 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…

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What is the difference between obesity and PWS?

…tend to include foods that are high in fat and have a low water content, for example biscuits and confectionery, crisps, peanuts, butter and cheese.” www.nutrition.org.uk/healthyliving/fuller/what-is-energy-density.html (So, low energy dense diets have been advocated for people with PWS for several decades, with good results when they have been maintained. How does this chime with the modified ketogenic diet (high fat, high protein) which some people are now reporting works well for their child?) High protein…

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IPWSO Leadership ECHO® Videos

…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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A Guide to the Transitional Years

…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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Mental Health

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 Caregivers Sharing international knowledge among professional service providers…

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Living and Working with Prader-Willi Syndrome

…looked uncannily like them. He said he would send off a blood sample for a genetic test for confirmation, but even when it came back negative, I knew in my heart of hearts that this was what she had. At that time, genetic tests for PWS were in their infancy; a further test when she was 16 subsequently found the tiny genetic abnormality. The paediatrician said Esther was only the second child he had ever…

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What is PWS?

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. Free Diagnosis Translated Guides Find support in my country…

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Research

Research We conduct research and also support and commission others to take part in research to benefit people with Prader-Willi syndrome.   Research on specialist services for people with PWS There is significant anecdotal evidence that PWS-specific residential services bring benefit and are necessary for many people with PWS if they are to have satisfied, socially integrated and healthy lives. However, there are very few peer-reviewed evaluations of these services. Without formal empirical evidence of…

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A guide to rituals and obsessions

…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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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.