by Nora McNairney | May 4, 2021 | Blog
Many of the people we work with at IPWSO observe the month of Ramadan. How does the period affect families and in particular how does the aspect of fasting affect people with PWS? Azhar Talib from PWS Malaysia told us more: Fasting during the month of Ramadan is a...
by Nora McNairney | May 4, 2021 | Blog
My name is Nikolinka Yordanova. I am a pediatric endocrinologist and core specialist of our PWS Multidisciplinary team at the First Pediatric Clinic, University Hospital “Sveta Marina“ in Varna, Bulgaria. The head of our Department, Prof. Violeta Iotova has...
by Nora McNairney | Mar 3, 2021 | Blog
When to test for Prader-Willi syndrome (PWS) We often hear from parents and doctors, who ask us at what stage they should suspect a diagnosis of PWS and how to obtain a diagnosis. Here are some of the early signs. For greater detail please visit our What is...
by Nora McNairney | Feb 26, 2021 | Blog
The Clinical and Scientific Advisory Board (CSAB) of IPWSO has published a new version of the document: “Sex hormones, fertility and sexuality in Prader-Willi syndrome”. In the article you can read about treatment with sex hormones in PWS and the effects of sex...
by Nora McNairney | Feb 22, 2021 | Blog
Here at IPWSO we are celebrating the lives of people with Prader-Willi syndrome this Rare Disease Day 2021! The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples’...
by Nora McNairney | Feb 19, 2021 | Blog
Do national laws matter? IPWSO President Tony Holland writes about the importance of education and of enshrining a right to education in national laws. At a recent Leadership ECHO® meeting the focus was on the provision of education for children with PWS. After the...