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…person with PWS has become quiet and even remorseful, ask them what you can do to help them next time something like this upsets them. You may be surprised at their answers and often they can lead to positive results. For example: “Please leave me alone for a while,” “Please listen to me,” “Please don’t treat me like a child,” These sorts of agreements can often prevent a future argument or blow-out. It’s all about…
…network sessions. We also recommend testing Zoom before your first network meeting. You can find general information about Zoom and participate in a test call here: https://support.zoom.us/hc/en-us/articles/201362193-How-Do-I-Join-A-Meeting- Yes – a few tips to make the experience satisfactory for everyone:- Understand how the meeting software works ahead of the meeting so you can easily use its features, including the mute/unmute buttons and the chat function; Test your own computer link to Zoom before the meeting, including…
…and we’ll be happy to put you in touch with the committee. Example resources We’ve gathered examples of resources for meetings with people with PWS on our website: Agendas, Anonymised meeting minutes, Example questions…and more! If you have resources from your own group meetings that you would like to share, please send them to office@ipwso.org. Videos presented by people with PWS Presentations from Our Way of Life Australia (OWLA) group members at the 6th Asia…
…testing for PWS to families in countries where this is not available locally. IPWSO has provided this service continuously since 2003 and to date, has funded the testing of over 500 samples received from 47 countries. Advice Service We are here for parents, families, associations, caregivers and professionals, and we can answer your questions. Just ask. Project ECHO® Project ECHO® is a key enabler to IPWSO’s strategy to grow and strengthen the PWS community. Support…
Research Papers Listed below along with their abstracts are selected papers on Prader-Willi syndrome newly appearing in PubMed in peer reviewed academic journals. All papers are initially listed without their summaries to give a quick overview, then for most of the papers the summaries are included later in the document. They are divided into specific categories: General PWS and families; Genetics, and brain imaging; Endocrine including Growth Hormone; Sensory and physical; Behaviour; Cognition and mental…
The presentation, course and outcome of COVID-19 infection in people with Prader-Willi syndrome: unexpected findings from an international survey J. E. Whittington, A. J. Holland, D. J. Driscoll, N. Hodebeck-Stuntebeck & A. Hoctor Orphanet Journal of Rare Diseases volume 17, Article number: 69 (2022) Results from our COVID-19 study have just been published, Teresa Tu has written a summary: COVID-19 is a respiratory virus first reported in humans in Wuhan Province, China and recognised as…
…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 access free testing. Find support in my country We…
…effectively with it. GABA (gamma-aminobutyric acid) is the major inhibitory neurotransmitter in the brain; it regulates muscle tone and provides the braking mechanism for behavior, allowing a person to “stop and think” before acting. GABA receptors are reduced in PWS, resulting in decreased GABA action in the brain that may also contribute to epilepsy, anxiety disorders and depression. *GABA (gamma-aminobutyric acid) is the major inhibitory neurotransmitter in the brain; it regulates muscle tone and…
One of the more frequent questions we receive is ‘what causes Prader-Willi syndrome?’ Prader-Willi syndrome is widely believed to be one of the ten most common syndromes seen in birth defect clinics around the world. However, despite being first described in 1956, many people including physicians are not familiar with this potentially life-threatening condition. Unfortunately, this can limit access to testing, vital information, and support throughout the world to those who need it the most….
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.