by Nora McNairney | Feb 22, 2021 | Blog
Here at IPWSO we are celebrating the lives of people with Prader-Willi syndrome this Rare Disease Day 2021! 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’...
by Nora McNairney | Feb 19, 2021 | Blog
Do national laws matter? IPWSO President Tony Holland writes about the importance of education and of enshrining a right to education in national laws. At a recent Leadership ECHO® meeting the focus was on the provision of education for children with PWS. After the...
by Nora McNairney | Feb 15, 2021 | News
IPWSO argues that Growth Hormone treatment should be universally available not just to children but also to adults with PWS. Our Clinical and Scientific Advisory Board has written to the Editor of the Orphanet Journal of Rare Diseases calling for the use of Growth...
by Nora McNairney | Feb 12, 2021 | Blog
IPWSO President, Professor Tony Holland, writes about our international advocacy work and asks for your views… IPWSO wants to hear from you – how can we best help raise awareness both nationally and internationally about the needs of people with PWS and...
by Nora McNairney | Feb 11, 2021 | News
A study published in the New England Journal of Medicine has shown exciting results from trials of a drug called semaglutide on people with severe obesity. The trial showed that people lost an average of 15kg when receiving semaglutide compared with only 2.6kg in...
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 10, 2021 | News
Our Clinical and Scientific Advisory Board has published a collated list of all PWS research papers published from October to December 2020. Download...
