A coordinated transition model for patients with cystinosis: from pediatrics to adult care.

Introduction: Improved outcome and longer life-expectancy in patients with cystinosis, and disease complexity itself, justify planning a guided-transition of affected patients from Pediatrics to adult medicine. The aims of the process are to guarantee the continuum of care and patient empowerment, moving from guardian-care to self-care.

Methods: review of articles, expert opinion and anonymous surveys of patients, relatives and patient advocacy groups.