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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……
…be loving and happy particularly in the early years. However temper outbursts and subtle changes, typically mood swings and behaviour difficulties may emerge over time. Some teenagers or adults with Prader-Willi syndrome can develop more serious mental health problems. Other findings: People with Prader-Willi syndrome may experience excessive daytime sleepiness and sleep apnoea, particularly if obese. Eye abnormalities such as strabismus (cross-eyed), myopia (near-sightedness) or amblyopia (lazy eye) are common. Treatment and intervention There is……
…countries where this is not available. Download instructions in English, Spanish, French or Arabic below.
For Families
For Medical Professionals Test Method The tests are performed on gDNA extracted from dried blood spots (DBS) on filter paper. All analyses are performed according to current EU guidelines maintaining very strict laboratory standards. The……
…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 access free testing. Find support in my country We have contacts……
…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
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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/…
…the University of Cambridge, and in 2002 was awarded the Health Foundation Chair 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 from 2016-2025 was the President of…
…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,…
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.