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...
by Nora McNairney | Dec 8, 2020 | Blog
Janneth and her husband are building a farm in Colombia to provide employment for their 13 year old son as he grows up. Granjeritos de Alejandria is a family business, created by Cristian and Janneth and their two young children Juan Alejandro and María Alejandra....
by Nora McNairney | 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...
