by Nora McNairney | Apr 21, 2023 | Blog
Kate is an adult living with PWS. In this personal blog she writes about what it is like to have PWS and what she wants other people to know about it. I am writing this article for carers because I have to educate them more on Prader-Willi syndrome. To help...
by Nora McNairney | Apr 18, 2023 | Blog
What is the impact of the month of Ramadan on families living with Prader-Willi syndrome? Azhar Talib, President of Persatuan Sindrom Prader-Willi Malaysia tells us about it: Ramadan is the ninth month of the Islamic calendar. For Muslims all over the world, Ramadan...
by Nora McNairney | Mar 8, 2023 | Blog
IPWSO interns April and Lauren tell us more about the research going on in China including the work of the PWS Research Group at the Children’s Hospital of Zhejiang University School of Medicine. Introduction Since it was first described in 1956, there has been a lot...
by Nora McNairney | Mar 1, 2023 | Blog
IPWSO Vice-President, François Besnier, attended the ASPAE conference in February 2023. I was very pleased and motivated to represent IPWSO at the 14th Congress of the African Society of Pediatric and Adolescent Endocrinology which was held in Yaoundé, Cameroon from...
by Nora McNairney | Dec 2, 2022 | Blog
Our Famcare Board has written a fantastic collection of guides to help families navigate the key issues affecting people with PWS. A guide to rituals and obsessions A guide to the transitional years After the Diagnosis, Relief and Acceptance Basics of a healthy adult...
by Nora McNairney | Nov 22, 2022 | Blog
We have a new guide from our Famcare Board which looks at how to support a person with PWS to manage their temperature. Some time ago our advice line was contacted by a person with PWS who asked how hot their bath should be. This was a good question. People with PWS...
