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PWS Information

…in 15,000 to 25,000 children are born with Prader-Willi syndrome. It affects all races and both sexes equally. Find out more about what causes PWS and how it affects a person living with it. 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…

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Peer Reviewed Articles

…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. What…

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FPWR Travel Awards 2025

Foundation for Prader-Willi Research Travel Awards 2025 11th International Conference: Ireland, 2022 Find out more about our conference held in Limerick. Previous conferences 2022: Ireland, 2019: Cuba, 2016: Canada, 2013: UK, 2010: Taiwan, 2007: Romania, 2004: New Zealand, 2001: USA, 1998: Italy, 1995: Norway, 1991: Netherlands. Scholarships Depending on availability 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…

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Preventing obesity and other risks

…carers to know so they can look after people with PWS better. Read Kate’s Story here. Make a donation ​We cannot provide these services without your support. Please consider making a donation. < Back to News & Events 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

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Having a brother or sister with PWS

…the siblings of people with PWS, the unique challenges they face, the rewards, and how best to support siblings within the family. The presentations from the meeting are shared below. Previous Family Meetings Managing challenging behaviour in PWS Read more on Siblings Make a donation ​We cannot provide these services without your support. Please consider making a donation. < Back to News & Events International Community IPWSO was established so that PWS associations, families, clinicians…

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Get Involved

…support us please get in touch! 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…

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The reality of life with PWS, one family’s story

…join Ideal Protein – for a number of reasons. 1) I liked the diet – no sugar, low fat, high in low sugar vegetables, and high in protein. 2) Breakfast and lunch were prepackaged – so no arguments from Lauren re: size of serving. 3) With 4+ cups of vegetables & 8 oz of protein a day – our plates looked (and were) loaded – a visual plus for Lauren 4) We were both eating…

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Putting PWS on the map

…that the particular needs of people with PWS and their families are included in policy and decision-making. A rare disease such as PWS affects only a small percentage of the population, but collectively rare diseases are not rare, affecting over 300 million people worldwide. The common challenges affecting people with rare diseases must be tackled internationally as well as ensuring that specific challenges are also highlighted. This year we worked with a student, Tegan Elliott,…

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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.