Supporting Individuals, Families And Researchers In The Cystinosis Community

News And Events

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

12th May 2012: Fishing Competition In Kent Posted January 2, 2012

On 12th May 2012, the Impy Inc Fishing Competition will be held at Greenacres Farm Fishery in Biddenden in Kent…. Read More

Who Are Orphan Europe Posted December 27, 2011

Orphan Europe were one of our sponsors at the Cystinosis UK conference held in Manchester in September this year for… Read More

Woman With Cystinosis Gives Birth Posted December 21, 2011

28-year-old Alison Kirk, from Wallasey, Wirral, has cystinosis and has been on kidney dialysis since she was 11. However, despite… 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.