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We love to hear your stories from around the world. In this blog post Ansh and his mum Shikha tell us about how Ansh made big changes in his life and how he hopes to inspire other people with PWS to lead healthy lives. Ansh is a young man growing up with PWS in India, next month he turns 17. Ansh has worked with his mum to raise awareness of PWS in India. Ansh weighed…
…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…
Trustee Dr Kate Woodcock is a Reader in Applied Clinical Psychology at the Centre for Applied Psychology in the School of Psychology at the University of Birmingham, UK. Her research focuses on young people who face psychological and behavioural difficulties, often those linked to neuro-developmental disorder. Several lines of her research focus specifically on individuals with Prader-Willi syndrome. Kate’s work has examined factors that come together to precipitate behaviours that can be challenging for individuals…
Tony Holland, IPWSO President, writes about Universal Health Coverage (UHC) and his personal experience in the UK: The COVID-19 pandemic has highlighted the importance of having access to medical care that is affordable. This is particularly important for people with rare disorders, such as Prader-Willi Syndrome, where there may be a range of often complex health needs. Being from the UK I take for granted the National Health Service (NHS) and the fact that treatment…
CSAB Member Marilyn has a faculty practice with patients with have childhood obesity, PWS, sleep disorders or learning disabilities. A founding member of Academic Pediatric Association’s Continuity Clinic Research Network, the HRSA-funded Genetics Initiative in Primary Care Education Advisory Committee, the APA representative to the March of Dimes Genetics in Practice Initiative, the NIH Secretary’s Advisory Committee on Genetic Testing Panel and the Pediatric Academic Societies Executive Committee. Marilyn was an IPWSO Trustee from 2016-2019…
…15 years. Interaction provides services to people with an intellectual disability. It also has a specialty for providing services for people with Prader-Willi Syndrome (PWS). It established the first specific accommodation program for people with PWS in 1995. In 1997 I was awarded a Churchill Fellowship to research innovative practices in Child Welfare in Europe and North America. I have commenced a PhD in Child Welfare and I sit on Boards of three Not For…
…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…
…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…
…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…
Find useful guides, research and information to help families manage PWS.
The latest medical and scientific research and information, plus guides into common medical issues affecting people with 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.