by Agnes Hoctor | 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 Agnes Hoctor | 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 Agnes Hoctor | 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 Agnes Hoctor | 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 Agnes Hoctor | 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 Agnes Hoctor | 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...
