What is it like to host an IPWSO conference?

What is it like to host an IPWSO conference?

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...
What are the effects of COVID-19 on People with PWS?

What are the effects of COVID-19 on People with PWS?

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...
IPWSO supports Rare Disease Day 2022

IPWSO supports Rare Disease Day 2022

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...
30 Years of IPWSO: Looking back, looking forward

30 Years of IPWSO: Looking back, looking forward

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...
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...