…Arabic and Turkish. These important documents were developed by IPWSO’s Clinical and Scientific Advisory Board and provide an overview of the most common and serious medical issues affecting people with PWS and a structure for the medical evaluation of their needs. We hope these translations will help many more professionals and families to provide the best care for people with PWS. Please help us to share this information by forwarding these links on to people…
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Professional Providers Abstract Submission Form
…category best fits the subject matter of your abstract. Desired topics include, but are not limited to: Aging in PWS Caregivers Working with the Family of the Person with PWS Creative Therapy Options for People with PWS (ex: Art, Dance, Music) Decreasing Challenging Behaviours in PWS Friends, Relationships and Sexuality Understanding Nutrition for People with PWS Overcoming Cultural Barriers and Stigma Siblings of People with PWS who are in Residential Care Supporting Families in Early…
About Project ECHO®
…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. PWSA…
Membership
…expert networks. Outreach Together we can support people in countries where there is no association and where knowledge and access to care may be very limited. Community Together we can make the global PWS community aware of the many free services, including diagnostic testing, offered by IPWSO. One Organisation Together we are IPWSO. Have a say in how IPWSO is run at our General Assembly and get more involved in our events. Membership fees €50…
The Jean Phillips-Martinsson Fund
…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…
Common Medical Issues
…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 in my country…
Growing a global ‘Rare Diseases’ community
…is still much to do to ensure that not only are health needs met, but that educational, emotional, and social needs are also met for all people with a rare disorder. There are of course unique challenges for people with PWS and their families. To try and address these IPWSO has established a project committee, chaired by Maria Libura, to focus specifically on policy issues and to have an international perspective. Along with the National Associations…
Countdown to European Hormone Day on 24 April 2024
…help spread the word, online or in person, focusing on whatever topics are most relevant to your community. If you’d like to take part in your community, you’ll find a public outreach toolkit with social media materials covering endocrine-disrupting chemicals, obesity and rare endocrine diseases, as well as the 10 Recommendations mentioned above. Translations of key materials are also available in 13 European languages. Find out more and download the materials here: www.europeanhormoneday.org. #EuropeanHormoneDay #BecauseHormonesMatter…
Preparing for the future: when parents die
…< Back to Adult Life 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…
Quick links
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.
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.