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PWS research in China

…Syndrome’. Orphanet Journal of Rare Diseases 18(1): 25. Yang, Jiayin et al. 2010. ‘Induced Pluripotent Stem Cells Can Be Used to Model the Genomic Imprinting Disorder Prader-Willi Syndrome’. Journal of Biological Chemistry 285(51): 40303–11. Yang-Li, Dai et al. 2022. ‘Recommendations for the Diagnosis and Management of Childhood Prader-Willi Syndrome in China’. Orphanet Journal of Rare Diseases 17(1): 221. Zhang, Yi et al. 2013. ‘Altered Functional Brain Networks in Prader–Willi Syndrome’. NMR in biomedicine 26(6): 10.1002/nbm.2900…….

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Mental Health

…B.Sc., M.B.B.S., M.R.C.P., M.Phil., F.R.C.Psych., Emeritus Professor of the Psychiatry of Intellectual Disabilities, University of Cambridge. Prader-Willi syndrome (PWS) is a complex genetic condition involving a range of physical, mental health and behavioral characteristics. This fact sheet has been prepared for people with PWS, families of people with PWS and for others who provide clinical, behavioral, and educational support. In the fact sheet the risks for specific mental illnesses, referred to as ‘affective disorders’ (depression,…

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Living and Working with Prader-Willi Syndrome

…in culture and space as Norway and Taiwan, but in every country, the children and adults with PWS face the same challenges. I am honoured to have been asked to be the representative for families and people with PWS in the EASO Patient Council and look forward very much to meeting other members of the Council at the upcoming Congress in Portugal in May.[i] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291957/ – Adults with Prader-Willi Syndrome: abnormalities of sleep and behaviour….

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Early results from IPWSO’s PWS and COVID-19 survey

…information that may help others, now or in the future. If you have supported someone with PWS through a COVID-19 illness please help us understand more about the infection – if English is not your first language do ask someone to help. Thank you very much. Just to reassure you we do not ask for names and no one whose information you have provided for us can be identified. www.ipwso.org/pws-information/covid-19 < Back to Our Blogs…

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Board of Trustees

…in Learning (Intellectual) Disability establishing the Cambridge Intellectual and Developmental Disabilities Research Group (www.CIDDRG.org.uk). His specific research interests include the eating, behavioural and mental health problems associated with having Prader-Willi syndrome (PWS). With colleagues he has published research extensively on these topics in academic and practice-based journals. He is Patron of the UK PWS Association and since 2016 he has been President of IPWSO. Since October 2015 he has held an Emeritus position at the…

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Clinical and Scientific Advisory Board

…MD, MBA, is President of the Fundacion SPINE, a centre for specialist treatment and research into Rare Diseases, specifically in PWS, in Argentina and she is Co-Founder of RDCom (Rare Diseases Community). Maithé Tauber Professor of Pediatrics, University of Toulouse. She directs the Reference Centre for Prader-Willi syndrome in France and is the Chair of the Scientific Council of Prader-Willi France. Her research includes oxytocin in PWS. Li-Ping Tsai Head, Department of Pediatrics, Taipei Tzu…

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When a person with Prader-Willi syndrome is in trouble with the law

…decide on legal advice to plead guilty, and the court will proceed to sentencing. If he/she decides to plead not guilty, then the court hearing will commence. There will be differences between countries, but in general, it is for the court to determine beyond reasonable doubt two factors: first that the alleged offence (hitting someone, stealing food) happened (referred to in some jurisdictions as actus reus), and secondly, that it wasn’t simply an accident but…

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What is the difference between obesity and PWS?

…on the Foresight Obesity Map at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/296290/obesity-map-full-hi-res.pdf Other messages I took home Much of the information presented was way over my head, as I have no medical training. However, with apologies to the various speakers whose research and views I noted down, but not their names, here are some further points I thought of interest or importance, with my comments in brackets. BMI size is not an indicator of health. It does not account for

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Support Us

…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 has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to…

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Quick links

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Information for
Families

Find useful guides, research and information to help families manage PWS.

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Information for Medical Professionals

The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.

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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.