Supporting the needs of adults with PWS, now and in the future

Supporting the needs of adults with PWS, now and in the future

How can we encourage the development of good quality support and care for adults with Prader-Willi syndrome?  A blog written by François Besnier for Prader-Willi France and shared with permission. These few lines are personal reflections, inspired and developed...
PWS in Africa

PWS in Africa

Earlier this month we held a Zoom meeting to bring together the PWS community in Africa. The purpose of the meeting was to share information, create new links and to develop a better understanding of the needs of families living on the continent. IPWSO currently has...
The reality of life with PWS, one family’s story

The reality of life with PWS, one family’s story

Lauren’s story has not been an easy one – on Lauren – or her family. Her mum Joanne told us more… Lauren is a twin – the youngest of five children.  From Lauren’s diagnosis, at four months, our family threw ourselves into supporting...
Ramadan, fasting and PWS

Ramadan, fasting and PWS

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...
Diagnosis: giving access to the best start in life

Diagnosis: giving access to the best start in life

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...