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.

Cystadrops Now Available for Patients in England Following advice from the Clinical Priorities Advisory Group (CPAG), NHS England has agreed to [...] Read more...
‘Cystinosis Connect’ Virtual Meet-up – 25th April 2021 Please join us for our next online meet-up. Your chance to virtually meet other patients and [...] 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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