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 Shelly Cordner | Jan 5, 2022 | Blog
IPWSO Chief Executive Officer, Marguerite Hughes, reflects on IPWSO’s 30th Year and our future plans. The new year is both cause for reflection and a time for finalising plans for the future. We do both in the shadow of COVID and in a spirit of solidarity...
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 | Sep 13, 2021 | Blog
As part of our work celebrating IPWSO’s 30th Anniversary in 2021, we asked members of the global PWS community to make films to highlight the challenges they face, as well as the achievements and developments that are happening around the world. We hope you...
by Agnes Hoctor | Sep 7, 2021 | Blog
Urs Eiholzer from the Centre for Paediatric Endocrinology, Zurich and member of our Clinical and Scientific Advisory Board tells us more about the latest research into PWS and Hypogonadism: Although hypogonadism is prevalent in males and females with PWS, knowledge...
