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 &...
by Nora McNairney | 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...
by Nora McNairney | Apr 8, 2020 | Blog
An understandable concern for people with PWS, their families and other carers at this time is, first, whether having PWS makes you more susceptible to catching COVID-19 and, secondly, whether people with PWS are more likely to be seriously affected if they are...
by Nora McNairney | Mar 22, 2020 | Blog
This is a very strange and difficult time for all of us wherever we live in the world. For some the coronavirus epidemic may appear to have passed, for others it is at the early stages. Countries are learning from each other and research is informing the actions that...
by Nora McNairney | Mar 21, 2020 | Blog
Just over a week ago I started hearing that the schools in Ireland might be closed because of the Coronavirus. I was still very surprised when my teacher told me that my school would be closing that day for the following two weeks. Since then I have been doing some...
by Nora McNairney | Mar 10, 2020 | Blog
Chapter 1 Our story is simple and yet rare. I will be the storyteller (Georgian), not because I would know more (by no means), nor because I would tell better (nor that), but because I want to take on this burden at least. We were two people, a couple, who lived a...
