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.

An Update Regarding Procysbi – January 2017 Some of you have asked us recently if we know when the new slow-release cysteamine medication [...] Read more...
Grandfather Shaves Head for Cystinosis When Will Newman’s granddaughter, Ellie, was diagnosed with cystinosis 5 months ago he [...] Read more...
Derby Moor Student an Inspiration to Us All Derby Moor student Eeshar Seehra was thrilled to achieve 3 A Levels in Maths, Physics and [...] 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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