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Diet and Nutrition

…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 is PWS? Translated Guides Find support…

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Siblings

…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…

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Advocating for Hope: IPWSO’s Impact at 2024 African Society for Pediatric and Adolescent Endocrinology Conference

…Ladjouze and Dr. Yasmina Ouarezki, a separate meeting for families of people with PWS. This gathering brought together 30 families and their children from across Algeria, alongside 40 healthcare professionals, creating a space for shared experiences, support, and invaluable networking. François Besnier, in his reflections, spoke of the profound impact of IPWSO’s initiatives, citing the overwhelming response from individuals in Algeria eager to remain connected with IPWSO. Furthermore, the significance of IPWSO’s free diagnostic testing…

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Famcare Board

…Board of Trustees Staff Advisers Clinical and Scientific Advisory Board Professional Providers and Caregivers Board < Back to Our People 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

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Research Papers

…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…

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What is it like to host an IPWSO conference?

…educationalists and the allied health professionals – psychologists, social workers, mental health professionals, physiotherapists, nurses, dieticians, speech therapists, occupational therapists, and doctors. It is an important and necessary initiative; people living with PWS need everyone to take a holistic view of how the syndrome affects them and often these professionals do not have opportunities to hear directly from people with the syndrome nor the specialist scientific and clinical communities that have the expertise and know-how…

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Covid-19

The link below sets out the responsibility of all countries to continue to ensure that people with disabilities receive the treatment they need and have access to care and treatment if they become unwell with COVID-19. Translations are available in Chinese, French, Russian and Spanish. The United Nations Human Rights, Office of the High Commissioner: Joint Statement: Persons with Disabilities and COVID-19 by the Chair of the United Nations Committee on the Rights of Persons…

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New funding for small PWS projects 2024

people living with PWS are wide-ranging there are no restrictions on the types of projects that would be considered for funding other than the expectation that projects will be of benefit to more than one family, are concerned with building the capacity of networks or individuals to support people with PWS or would involve activities that are expected to directly assist people with PWS and their families. IPWSO will follow up with funding recipients for

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New funding for small PWS projects 2024

people living with PWS are wide-ranging there are no restrictions on the types of projects that would be considered for funding other than the expectation that projects will be of benefit to more than one family, are concerned with building the capacity of networks or individuals to support people with PWS or would involve activities that are expected to directly assist people with PWS and their families. IPWSO will follow up with funding recipients for

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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.