To educate paediatric nephrologists on how to support patients with cystinosis and what tools can be used to manage transitioning patients. Recordati Rare Diseases is a member of the Recordati Group and are committed to the wellbeing of patients with rare diseases.

Our approach

Developed and facilitated by Cogora, the one-hour long symposium was hosted by three leading paediatric nephrologists and a psychologist. The speakers discussed the challenges with early diagnosis, cystinosis treatment and the difficulty with adherence in adolescence, and how this can be improved.

The speakers also spoke about the Cystinosis & Me app which Cogora recently developed for Recordati Rare Diseases. Created in collaboration with leading experts in the field of cystinosis, the app is designed to guide adolescent patients through the process of becoming more involved in the management of their healthcare and medical decisions as they transition to adulthood. Patients can also use the information generated in the app when meeting with their healthcare professional to help follow their progress.


The client was very pleased with the content we delivered during the symposium and found the speakers engaging, which resulted in many questions from the audience during the Q&A session. The audience also showed a keen interest in the Cystinosis & Me app.