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Supporting the needs of adults with PWS, now and in the future

Nov 23, 2021

…in great pain. Let’s examine some hypotheses: The framework and its evolution Justified in large part by the necessary control of access to food, a framework is put in place very early in many families, a framework that is sometimes very (or too) rigid, motivated by the fear of obesity. But with schooling, the comparison with other children, the greater freedoms outside the family framework and the lack of understanding amongst wider friends and family,…

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Caregivers’ Forum

Jul 4, 2024

…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? 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. Free Diagnosis If you suspect your patient…

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Past ECHO® Programmes

Jan 10, 2023

…grateful to Pfizer for support of this programme. February-December 2021 People with PWS have complex and changing physical and mental health needs over their lifetime requiring the skills of various health disciplines and a multi-disciplinary approach to treatment. The IPWSO Health ECHO was open to a wide range of health and allied professionals who work with people with PWS. The goal of the IPWSO Health ECHO was to assist health professionals who work with people…

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Research and Clinical Trials Update Meetings

Jul 19, 2023

…& 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 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…

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IPWSO supports Rare Disease Day 2021

Feb 2, 2021

Rare Disease Day takes place on Sunday 28th February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. There are over 300 million people around…

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Helping carers to understand PWS: Kate’s story

Apr 21, 2023

…we can’t help the way we look. It is the way we were born, people should not stare or treat us differently. They should treat us like normal people in the normal community and treat us as an equal person. Don’t judge a book by its cover, take a chance to get to know the real person inside. It is the person inside that counts. Just give us a chance to get to know us,…

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The Jean Phillips-Martinsson Fund

Feb 9, 2021

…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 Sharing international knowledge among professional service providers throughout…

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Can you help more families access PWS support?

Nov 15, 2023

…care and treatment of people with PWS. We want to change that. We’re working to ensure everyone with PWS across the world has equal access to diagnosis, treatment, research and community. That’s why our advice line is open to anyone with a question about PWS, and most questions come from people living in countries without a PWS association. Many questions come from parents or siblings who are desperate to help a loved one whose weight…

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Common Medical Issues

Sep 15, 2020

Common Medical Issues We have collected information and resources relating to common medical issues affecting people with Prader-Willi syndrome. Please also refer to our Consensus Documents, Medical Alerts and Information for Families. Growth Hormone Therapy Mental Health Fertility, sexuality & sex hormones Gastro-intestinal problems We have produced a 1-page document on how people with PWS can avoid obesity. < Back to Information for Medical Professionals International Community IPWSO was established so that PWS associations, families,…

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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.

Find out more
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.

Find out more
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. 

Find out more