by Nora McNairney | Apr 13, 2022 | News
XI Conferencia Internacional IPWSO 2022 (*) University of Limerick – Irlanda 6 al 10 de julio Ya es tiempo que volvamos a reunirnos presencialmente como comunidad global, después de estos difíciles tiempos de pandemia en que hemos estado aislados. IPWSO 2022 ha...
by Nora McNairney | Mar 25, 2022 | Blog
PWS China has recently joined IPWSO, we asked them to tell us a bit about their work and mission: Prader-Willi Syndrome Care & Support Center, China Since 2017 the Prader-Willi Syndrome Care & Support Center (China) has supported people with PWS in the...
by Nora McNairney | Mar 24, 2022 | Blog
An interview with Gary Brennan, National Development Manager, Prader-Willi Syndrome Association of Ireland, on the International Prader-Willi Syndrome Organisation Conference 6-10 July 2022, Limerick, Ireland How does it feel to be the host for the next international...
by Nora McNairney | Mar 1, 2022 | Blog
The presentation, course and outcome of COVID-19 infection in people with Prader-Willi syndrome: unexpected findings from an international survey J. E. Whittington, A. J. Holland, D. J. Driscoll, N. Hodebeck-Stuntebeck & A. Hoctor Orphanet Journal of Rare Diseases...
by Nora McNairney | 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 Nora McNairney | 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 Nora McNairney | 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 Nora McNairney | 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 Nora McNairney | Sep 29, 2021 | News
We are looking for people interested in joining the IPWSO Board from July 2022. Could you get involved and help guide and support our vital work? Trustees play a crucial role in the work of IPWSO. We are lucky to work with a fantastic group of people on our current...
