Introduction: Improved outcome and longer life expectancy in patients with cystinosis and the intrinsic complexity of the disease, underline the need for a guided transition of patients from pediatric to adult care. The process aims to guarantee the continuum of care and enable the empowerment of patients from guardian to self-care.
Methods: Bibliography review, expert opinion and anonymous surveys of patients, relatives and patient advocacy groups.
Results: A new plan to support and coordinate the transition of cystinotic patients providing specific proposals for a variety of medical fields and improved treatment adherence. Nephrologists play a key role in the transition since most cystinotic patients have severe chronic kidney disease and require kidney transplantation before adulthood.
Conclusion: We present a proposal providing recommendations and a chronogram to aid the transition of adolescents and young adults with cystinosis in our area.