Chair, Clinical and Scientific Advisory Board University of Florida Health Sciences Center Div. Genetics / Dept. of Pediatrics Gainesville, FL U.S.A….
Dan Driscoll
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Neil Gumley
Service Manager PWS specific facility in Melbourne Australia Neil gained a Science/Disability Degree from RMIT University in Melbourne Australia in 2010 while at the same time working at the Department of Health and Human Services specialising in the management of Complex Behavioural Accommodation facilities. In 2014 Neil moved into the Operation Managers role where he was tasked with the Establishment of the First PWS specific accommodation in Melbourne Australia. The facility has now been running successfully…
Congratulations to Georgina Loughnan: a champion for people with PWS
Many of you will know Georgina Loughnan – she has been involved with IPWSO for many years both on the Board and as part of Famcare. It has just been announced that she has been awarded the Order of Australia Medal (OAM) in the Queen’s Birthday Honours for her work with people with PWS. Many many congratulations – for anyone who knows her it goes without saying that this honour is so very well deserved….
Feeling the heat in PWS!
…to make good decisions, for example about bath temperature or what clothes to wear when the weather changes. Our Famcare Board agreed this was an important issue for them to investigate and this has resulted in their new factsheet, Too hot, Too cold: Abnormal temperature sensation. In this guide the Famcare Board outline some of the main issues that a person with PWS might need support with, these can include: Setting a safe temperature in…
IPWSO conference 2025
…need for a vote amongst the membership. We are delighted to announce that the 2025 conference will be held in the USA in partnership with PWSA | USA. We are keen to tell our members more about the bid and what the conference will be like. PWSA | USA are now in the build up to their own 2023 convention, therefore we will arrange a meeting to present the details later in the year. …
Louis explains how life has changed recently in Ireland
…an Italian restaurant! I was also able to buy (online!) the full thirteen book set of David Handler’s Lemony Snicket series. I hope they arrive soon. I can’t go to visit my granny anymore, but I can talk to her on the telephone! It sounds very likely that the schools will be closed for longer than two weeks. I don’t really mind even though I miss spending time with my friends in school. by Louis…
Endocrinology and Prader-Willi syndrome
…at the University of Pretoria, South Africa on identifying/diagnosing and supporting families in Africa, drawing on her particular experiences from South Africa. Engela was joined by Karin Clarke from Prader-Willi Syndrome Support (South Africa). The presentations were followed by a question and answer session. A recording of the webinar is now available below. If you have any questions about the care and treatment of people with PWS please do not hesitate to contact us. …
PWS in Vietnam
contributed by Georgina Loughnan Georgina Loughnan (IPWSO Board member) Constanze Laemmer (paediatrician and nutritionist), Norbert Hodebeck-Stuntebeck (from the Professional Provider Caregiver Board) visited Hanoi, Vietnam, to present a one-day Prader-Willi Syndrome programme on both Saturday 12th and Sunday 13th October, 2019, at the request of Do Thuy Lan, the psychiatrist who established the Morning Star Centre for children with disabilities and who won a scholarship to attend the PPCB Conference in Munich last year. The…
Webinar on the endocrinology of PWS, for professionals in Africa
…and Adolescent Endocrinology (ASPAE) and the International Prader-Willi Syndrome Organisation (IPWSO) invite you to a webinar to learn more about the signs and symptoms of the syndrome, diagnosis and management. The Webinar will be held at 5pm WAT on Thursday 8th September 2022 (the meeting will last 60 mins). To register please use this link: https://us06web.zoom.us/meeting/register/tZUocu6orTMtHt3aB1tJ9rVdqYBUmkJdFPZP If you have any questions in advance or following the event, do contact Agnes Hoctor at IPWSO on office@ipwso.org….
Quick links
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.