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 IPWSO | 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 IPWSO | 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 &...
by IPWSO | May 13, 2020 | Blog
Karin writes about life with her daughter in South Africa in a post originally shared on the Prader-Willi Syndrome Support – South Africa facebook page and reproduced here with permission. People with Prader-Willi syndrome (PWS) have some quite unusual traits...
