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Our Blog

Covering issues, stories and the latest news regarding Prader-Willi syndrome.

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Tribute to Francie Thornton

Tribute to Francie Thornton

26 September 2025
Francie Thornton 1984-2025 We were very sad to receive the message a few weeks ago that Francie Thornton, daughter of Linda and Nick Thornton, New Zealand (NZ) had died aged 40. Francie was the youngest of three sisters and had the diagnosis of PWS at the age of four as the youngest with PWS in
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United in Hope 2025 PWS Conference – Tips for your trip

United in Hope 2025 PWS Conference – Tips for your trip

27 March 2025
Beat the Heat in Arizona! As we count down the days to the United in Hope: International PWS Conference in Phoenix, AZ, our excitement at gathering with many families from the PWS community grows! We’ll be spending time with old friends, making new ones, and collectively sharing information, ...
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I Am Full – Stories for Jacob – Dan Yashinsky

I Am Full – Stories for Jacob – Dan Yashinsky

13 September 2024
Jacob Evan Yashinsky-Zavitz lived his life with enormous courage and humour, dealing every day with the intense hunger known as hyperphagia that accompanies Prader-Willi Syndrome. In creating a rich and meaningful life for himself, he also became a wise advocate for people living with PWS and ...
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Planning for change. Exciting opportunities!  

Planning for change. Exciting opportunities!  

24 June 2024
I am of an age and a generation where blogs and social media remain a bit of a mystery. I also remember a 'pre-google era' when the local library or the school library were the main sources of information - yes there was such a time!
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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.

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Information for
Families

Find useful guides, research and information to help families manage PWS.

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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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Information for
Professional Caregivers

Sharing international knowledge among professional service providers throughout the world.

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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 and it affects all races and both sexes equally.  

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Free Diagnosis

If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing.

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Find support in my country

We have contacts in many countries and regions around the world.

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