by Nicki Francomb | Aug 24, 2020 | Blog
Without support and good management of diet and nutritional behaviours, PWS will lead to morbid obesity. This is due to the combination of the overriding desire to eat, coupled with low muscle tone. In order to manage the person with PWS’s weight, it is important to...
by Nicki Francomb | Aug 24, 2020 | Blog
This is one of the most common questions asked particularly by new parents and family members of a new-born baby or child with PWS. The syndrome is rare and in many parts of the world there is limited access to support and information. Most people, including many...
by Nicki Francomb | Aug 6, 2020 | Blog, Uncategorised
IPWSO is aware of many services for people with Prader-Willi syndrome that are entirely reliant on private fundraising and are now struggling due to the downturn in fundraising caused by COVID-19. One such service is the only PWS-specific residential service...
by Nicki Francomb | Jul 30, 2020 | Blog
A common question from the medical community as well as parents who do not have prior knowledge of a rare disorder such as Prader-Willi, is what are the symptoms? Prader-Willi syndrome is a genetic condition whose cause is quite complex, but symptoms are usually...
by Nicki Francomb | Jul 28, 2020 | Blog
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...
by Nicki Francomb | Jul 27, 2020 | Blog
Tony Holland, IPWSO President, writes about Universal Health Coverage (UHC) and his personal experience in the UK: The COVID-19 pandemic has highlighted the importance of having access to medical care that is affordable. This is particularly important for people with...
by Nicki Francomb | Jul 8, 2020 | Blog
IPWSO President Tony Holland reports on the survey responses received so far… Shortly after COVID-19 had been declared a pandemic IPWSO set up a survey to better understand how COVID-19 infections might present in people with PWS and also to investigate...
by Nicki Francomb | Jul 6, 2020 | News
Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from April to June 2020. Download...
by Nora McNairney | Jun 9, 2020 | Blog
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...
by Nora McNairney | May 22, 2020 | Blog
IPWSO President, Tony Holland, writes about getting involved in the international rare diseases world. There has been considerable international activity about rare diseases in the last two weeks. I attended the 10th European Conference on Rare Diseases &...
