…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…
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A guide to rituals and obsessions
…another person. Some examples of problematic rituals and obsessions include: Asking repetitive questions or repeating the same statement over and over Hoarding Ordering and arranging objects Refusing to throw out old clothes Collecting cheap items such as newspapers, pamphlets, pens, magazines or hairclips to the point where their bedroom is cluttered Squeezing a shampoo or shower gel bottle too many times, so using “too much” Excessive use of tissues, toilet paper, sanitary pads Wanting to…
What are the effects of COVID-19 on People with PWS?
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…
Promoting Positive Behaviour
…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…
What causes Prader Willi syndrome?
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….
Advisers
…with PWS, James’ education, management and operating experience spans national and international charities, special school settings and disability services. James holds numerous volunteer appointments, including: Council Member, RARE Global Advocacy Leadership Council, Global Genes; President, Prader-Willi Syndrome Australia; Founding Director, PWS Better Living Foundation. James’ love for his two children, including his son Ashley, living with PWS, drives his desire to establish PWS education, advocacy and support services across Australia and around the globe. James…
Support Us
…Support As an international umbrella organisation we support all country PWS associations, and for all countries where there are no formal associations, we support medical and parent delegates as part of our global community. IPWSO has contacts in over 100 countries and is a world-wide parent-led support organisation. We also offer free diagnosis for PWS in countries where this is not available. Project ECHO® Project ECHO® is a key enabler to IPWSO’s strategy to grow…
What is the treatment for Prader-Willi syndrome?
…Board largely consists of parents, complemented by a network of medical experts and advisers. We know what PWS is like and the impact it has on a family. If you want to find out more information about any aspect of the condition, please contact us and use our ‘Ask an Expert’ facility. Your questions can be answered by professionals in our network, or by parents who know what it’s like. < Back to Our Blogs…
IPWSO Health ECHO® Videos
…Nutrition; Physiotherapy; Early intervention; Endocrine aspects; Orthopedic problems; Additional health issues. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary. Dr Kate Baker, Cambridge University Hospitals, University of Cambridge “Prader-Willi syndrome: Genetic diagnosis” PART 2 of Dr Kate Baker’s presentation, “Prader-Willi syndrome: Clinical presentations and genetic diagnosis” presented at the IPWSO Health ECHO on February 16, 2021. This part of the talk…
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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.
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.