by Nora McNairney | Feb 4, 2021 | Blog
We recently heard from our contact Zurab (father to Noe, pictured) in Georgia who reported the good news that the Georgian Ministry of Health has made the decision to provide free Growth Hormone Treatment to children with PWS. Zurab, along with other families, the...
by Nora McNairney | Feb 2, 2021 | Blog
Rare Disease Day takes place on Sunday 28th February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples’ lives. The campaign targets primarily the general...
by Nora McNairney | Jan 26, 2021 | Blog
In this blog Kate speaks about life growing up with PWS and what her life is like now. This blog has been reproduced here with permission from Kate and Aruma where the blog was first posted. It was hard work for my parents when I was young. Having a child with special...
by Nora McNairney | Jan 19, 2021 | Blog
Abrazos que hablan. Un Prader-Willi en la familia, escrito por Anna Ripoll, asigna todos los beneficios a la Asociación Catalana SPW para la investigación del síndrome El primer trabajo de Anna Ripoll, expresidenta de la Asociación Catalana SPW, explica la vida de su...
by Nora McNairney | Jan 8, 2021 | Blog
Photo above (left to right): Hans Zellweger, a child neurologist from Iowa who worked in the field and was the thesis supervisor for the PWS research of Louise Greenswag, Gene and Fausta Deterling, from Minnesota, early organizers of what became PWSA (USA), Andrea...
by Nora McNairney | Dec 16, 2020 | Blog
Festivals, festivities and holidays form part of all cultures. Yet, for many reasons, they pose special challenges for people with PWS and their families. We asked a selection of parents from around the world for their advice on how best to manage during times of...
