Advisor & Founder – Jonathan Terry

Established The Cystinosis Foundation UK In: March 1999

I launched the Foundation in 1999, having been motivated to set up a support group for cystinotics in the UK after attending a meeting of the US Foundation and talking to its founder. I also consulted the leader of CLIMB, herself a mother of a cystinotic, who agreed that it was time for a separate organisation for cystinotics. Since its formation, I have been the central organiser and dealt with hundreds of enquiries from patients and families.

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