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.

Become a Trustee The Cystinosis Foundation UK has a small dedicated team of trustees that run its operation, [...] Read more...
Luka Prepares for London Marathon Luka Babiy, whose sister has cystinosis, is running the London Marathon this year despite never [...] Read more...
Tina Biss Shares Her Tips for Parents We’re pleased to be able to share with you some tips written by Tina Biss for parents 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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