What is Cystinosis?

Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed countries. It occurs when the mechanism removing excess cystine (an amino acid) breaks down.

However, these days with better understanding and earlier diagnosis, people with cystinosis are able to lead a longer, fuller life. It is the Foundation's aim to aid researchers and the cystinosis community to strive for continued improvements.

Wendy Walks Again for Cystinosis Last year Wendy Exelby, whose son Adam has cystinosis, raised £400 for us by doing a sponsored [...] Read more...
POSTPONED: National Cystinosis Study Day at QE Hospital, Birmingham UPDATE: Unfortunately this event has been postponed until Spring 2018. When a new date is [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
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