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The home page of the family support group “Cystinosis Foundation UK” can be found at www.cystinosis.org.uk.
The name of the child on whom this article is based has been changed.
Funding: RJMC is supported by the Medical Research Council.
Competing interests: None.
Patient consent: Parental/guardian informed consent was obtained for publication of the person’s details and for the publication of figs 3 and 4 in this report.