Cystinosis Foundation UK - supporting individuals and families affected by cystinosis, a rare metabolic disorder The charity was founded in 1998 by Jonathan Terry MBE. To provide support to anyone diagnosed with cystinosis, as well as their families and friends.To highlight the disorder to members, the medical profession and the wider community.To assist in the promotion of research into the treatment of cystinosis.To work alongside other similar organisations in understanding more about metabolic disorders in general