by Agnes Hoctor | Feb 21, 2022 | Blog
It’s one week until Rare Disease Day which takes place on Monday 28th February. Rare Disease Day is, “the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living...
by Agnes Hoctor | Dec 8, 2021 | News
Has your PWS Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada and most recently Cuba. Ireland will host in 2022, maybe you could host in 2025? The...
by Agnes Hoctor | Nov 23, 2021 | Blog
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...
by Agnes Hoctor | Nov 23, 2021 | Blog
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...
by Agnes Hoctor | May 14, 2021 | Blog
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...
