Cystinosis Foundation UK

Cystinosis Foundation UK was founded in 1998 by Jonathan Terry MBE.

Charity status was achieved in March 1999 and a launch conference was held that April in Leeds. Since that time significant funds have been raised for research related to cystinosis, many patients and parents have been helped with advice and support, and awareness of cystinosis among the medical community has been raised.

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. In the past, it was rare for people with cystinosis to survive into adulthood.

However, with better understanding and earlier diagnosis, it is possible for people to lead a longer, fuller life. It is the Foundation's aim to aid researchers and patients to achieve this.