by Agnes Hoctor | 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 Agnes Hoctor | 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 Agnes Hoctor | 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 Basics of a healthy adult lifestyle Confabulation / story telling...
by Agnes Hoctor | 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...
by Agnes Hoctor | Oct 20, 2022 | Blog
A Mother’s Experience: a report on the social and psychological experiences of mothers raising children with Prader-Willi syndrome At IPWSO, we engage with families from all backgrounds and cultures to provide support for people with Prader-Willi syndrome globally. It...
by Agnes Hoctor | Oct 17, 2022 | Blog
Thanks to Global Genes we have been able to provide some new translations to benefit the Turkish-speaking PWS community. The International Prader-Willi Syndrome Organisation (IPWSO) is a recipient of the 2022 Health Equity in RARE Patient Impact Grant sponsored by...
