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…world’ (Donellon, Mirenda, Mesaros & Fassbender, p.18.1985) So, it is learning to interpret the behaviour, as a communication, that is the key. The thing is, we interpret everyone’s behaviour according to our own perceptions – whether we like, or dislike a person, what we judge them on, and how they measure up, etc. Well, guess what? People with PWS will also interpret everyone’s behaviour, but according, of course, to their own perceptions. And we know……
…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.
Free Diagnosis Translated Guides Find support in my country……
…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 | USA Medical Alerts
Medical Alerts in your language
Consensus Documents……
…Our Goals: Enhance public awareness and understanding of PWS community. Avoid misdiagnosis and ensure early diagnosis, timely interventions and accurate treatments. Maximize access to policy, medical and therapeutic resources. Alleviate burdens on PWS families. Improve public understanding of PWS community. Foster inclusive, diverse, harmonious and respectful social environment. Conduct research on PWS community. Enhance benefits of PWS community in areas such policy, medical care, education and social welfare. For more information visit their website: http://www.xpwilli.org/……
…or person concerned. IPWSO will treat all applications to facilitate the undertaking of a clinical trial similarly and will not benefit or promote one trial over another due to IPWSO receiving any form of financial gain from one or other of the companies involved. IPWSO will, in no manner, be limited by any company in the support of trials by another company. IPWSO expects that potential participants with PWS and other relevant people (e.g., family……
…and symptoms, but are unable to access testing in your country, then you may be able to access free testing. For the most up to date information on the clinical features of PWS and how to diagnose the syndrome, please refer to the following article. Driscoll DJ, Miller JL, Cassidy SB. Prader-Willi Syndrome. [Updated 2023 Mar 9]. In: Adam MP, Mirzaa GM, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle;…
…at times extreme obesity due to hyperphagia (excessive drive to eat) if access to food has not been limited, scoliosis (S-shaped curvature of the spine), intellectual disability, and often a history of temper outbursts, repetitive and ritualistic behaviours, and occasionally severe skin picking. What causes PWS? PWS is caused by the presence of a genetic abnormality involving chromosome 15. The commonest cause is the loss (deletion) of a small part of the copy of chromosome…
IPWSO Leadership ECHO® Videos Materials from IPWSO Leadership ECHO® are available here. Maithé Tauber, Professor of Pediatrics, University of Toulouse and Director of the Reference Centre for Prader-Willi syndrome, France “New Data in PWS and Perspectives” Presented at the IPWSO Leadership ECHO on February 8, 2022. Maithé’s presentation includes an Overview of PWS; Mental Health; Endocrine and Metabolic Troubles; Scoliosis, COVID 19; and Therapeutic Perspectives. Maithé first gave a brief summary of previously known data,…
…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….
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.