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.

New Fundraising Guide Now Available We have just released a new improved fundraising guide. It’s packed full of information [...] Read more...
Rare Disease Day 2015 28th February 2015 is the eighth international Rare Disease Day, which takes place on the last [...] Read more...
Morven’s Story Morven is a brave 5 year old girl who has cystinosis. Please watch this video for an insight [...] 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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