Supporting Individuals, Families And Researchers In The Cystinosis Community

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News And Events

Paddock Wood Half Marathon Posted January 28, 2012

If you go down to Paddock Wood on the 25th March, you’re sure of a big surprise… Because among the… Read More

2012 International Conference Confirmed Posted February 5, 2012

The 7th International Cystinosis Conference will be held at the Marriott Charles de Gaulle, Paris, France between June 28 –… Read More

Quizzy Rascals Posted May 7, 2012

Well done to CFUK Trustee Neil Hutchison and his wife Alex, who raised £1,088 (and 15 pence!) through a quiz… Read More

Sisters raise awareness in national newspapers Posted May 6, 2012

Sisters Emily,3, and Poppy-Mae,23 months, have recently raised awareness for cystinosis by appearing in both the Sun and Daily Mail… Read More

An Eggs-ellent Easter Fundraiser Posted April 10, 2012

Kelly Chilvers, mother of 17 month old Daniel Howell who has Cystinosis, is proud to report a very successful fundraiser… Read More

Derby Winners Posted March 8, 2012

2012 is a year where many hopeful athletes undergo hours of training and physical exertion in order to better themselves… Read More

Card Gains June Challenge Posted March 3, 2012

On June 26th around 80 people will be taking part in the 2012 Card Gains Olympic Challenge! The challenges involves… 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.