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...
