by IPWSO | Nov 11, 2020 | Blog
What are the challenges of discussing Prader-Willi syndrome at an international level and how can we make sure that the needs of people with PWS are included when decisions and new policies are made? At IPWSO we engage with international organisations to advocate on...
by Nicki Francomb | Aug 25, 2020 | Blog
We love to hear your stories from around the world. In this blog post Ansh and his mum Shikha tell us about how Ansh made big changes in his life and how he hopes to inspire other people with PWS to lead healthy lives. Ansh is a young man growing up with PWS in India,...
by Nicki Francomb | Aug 24, 2020 | Blog
Without support and good management of diet and nutritional behaviours, PWS will lead to morbid obesity. This is due to the combination of the overriding desire to eat, coupled with low muscle tone. In order to manage the person with PWS’s weight, it is important to...
by Nicki Francomb | Aug 24, 2020 | Blog
This is one of the most common questions asked particularly by new parents and family members of a new-born baby or child with PWS. The syndrome is rare and in many parts of the world there is limited access to support and information. Most people, including many...
by Nicki Francomb | Aug 6, 2020 | Blog, Uncategorised
IPWSO is aware of many services for people with Prader-Willi syndrome that are entirely reliant on private fundraising and are now struggling due to the downturn in fundraising caused by COVID-19. One such service is the only PWS-specific residential service...
by Nicki Francomb | Jul 30, 2020 | Blog
A common question from the medical community as well as parents who do not have prior knowledge of a rare disorder such as Prader-Willi, is what are the symptoms? Prader-Willi syndrome is a genetic condition whose cause is quite complex, but symptoms are usually...
