Zellweger Spectrum Disorder, otherwise known as GPD (Generalised Peroxisomal Disorder), is a very rare genetic condition belonging to a group of diseases called Peroxisomal Biogensis Disorder (PBD). Most children don’t live into adulthood and deal with global developmental delays, deaf-blindness/multi-sensory loss and a plethora of other health issues. Life with Zellweger Spectrum Disorder can feel incredibly lonely. Most doctors and paediatricians have never even heard of Peroxisomal Disorders, so specialists experienced in the condition are very few and far between. Zellweger UK is made up of a team of volunteers; parents, family and friends of affected children. Our aim is to offer emotional support and provide financial support to families in the way of small grants towards non state funded equipment. Crucially, we are looking to raise awareness of this unexposed condition and help towards funding research into desperately needed, effective treatments, of which currently there are none. There is some exciting research currently being undertaken by dedicated scientists, but this type of research takes time and is costly. Peroxisomal Disorder is rare and therefore receives little funding towards research. Sometimes the needs of a few has to be as important as the needs of many; our hope is that through research into lesser known conditions exciting discoveries can be made that could benefit many other conditions too. Your support is vital in enabling us to help fund this.
Welcome to the home of Zellweger UK. A place where families impacted by Zellweger Spectrum Disorder can find support, and where anyone can find out more about the condition and how it affects children and their families..
Registered charity number: 1166389