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.

Artwork Needed for Art Exhibition Cystinosis Research Network is looking for art contributions from cystinosis patients, to be [...] Read more...
River Rat Racers Brave Gruelling Obstacle Course for Cystinosis Last month Richard Ayre and friends completed the 10K Stockton River Rat Race in honour of [...] Read more...
Jessica Jondle Publishes Book About Life With Cystinosis Jessica Jondle, 30, a teacher from California, USA, has written a book about her experiences of [...] 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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