Cystinosis Foundation UK

Cystinosis Foundation UK

The charity was founded in 1998 by the late Jonathan Terry MBE, who had cystinosis. In concert with the Trustees that he assembled, Jonathan established the aims for the Foundation and wrote the Constitution.

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.

• Date: June 14, 2024