by Nora McNairney | Jun 2, 2019 | Blog
Photo above: Anders receiving his award for participating in IPWSO’s 6th conference in Romania, with one of his own paintings on the wall depicting his holiday in Burma with the Orangutans. Anders’ mother, Jean Phillips-Martinsson, was IPWSO’s first...
by Nora McNairney | Nov 12, 2018 | Blog
Gina Mullis is a Kiwi, living and working in Ireland. This was her first experience of a PWS conference and she writes… I was very fortunate to be given the opportunity to attend the IPWSO 5th International Caregiver’s Conference in Munich this year. It was...
by Nora McNairney | Oct 9, 2018 | Blog
Maria Benekova, our IPWSO representative from Slovakia and recipient of an educational grant to attend the Caregivers’ Conference in Munich (August/September this year) has written a report telling us a little about life in Slovakia and how, by attending the...
by Nora McNairney | Nov 28, 2017 | Blog
40 years awareness of “Rare disease” – Anna and Giuseppe Baschirotto My visit to B.I.R.D. in September 2017 by Verena Gutmann (IPWSO Board Member – Austria) Some weeks ago I visited the B.I.R.D. Institute (Baschirotto Institute of rare disease) in Longare di...
by Nora McNairney | Aug 7, 2017 | Blog
By Jackie Gill (UK) It is one of life’s little ironies that before Prader-Willi syndrome (PWS) came into my life I was a very picky eater, and with such a small appetite that I was very underweight until after both my children had been born. My first child was a...
by Nora McNairney | Jun 29, 2017 | Blog
Earlier this year, I was invited to become a member of the Patient Council of the European Association for the Study of Obesity (EASO), to represent people affected by PWS. I was then kindly invited to attend the 24th European Congress on Obesity in Portugal as a...
