Supporting Individuals, Families And Researchers In The Cystinosis Community

News And Events

Paddock Wood Half Marathon Posted January 28, 2012

If you go down to Paddock Wood on the 1st April, you’re sure of a big surprise… Because among the… Read More

Want To Talk About Cystinosis? Posted February 4, 2012

The Foundation is trialing a "Once A Month Chat Line" to allow those affected by cystinosis to have a discussion… Read More

Cystinosis Foundation UK now on Twitter Posted January 29, 2012

We are now on Twitter! The Cystinosis Foundation are now on Twitter, and you can follow all our latest new… Read More

A Short Cut To Success Posted January 24, 2012

On 30th January, a sponsored hair-cut will be held for the Cystinosis Foundation UK. Charity trustee, David Benford, picks up… Read More

Theme Park Fun For Harley Posted January 11, 2012

Five-year-old Harley Ingham, who has cystinosis, is set to enjoy a trip with his family to Lego Land, thanks to… Read More

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, Cystinotics are able to lead a longer, fuller life. It is the Foundation's aim to aid researchers and Cystinotics to strive for continued improvements.