- News
03/03/2025
Rare Diseases Day 2025
On 28th February, James Ennis, a board member of Cystinosis Ireland and an adult living with cystinosis, represented the organisation at Rare Diseases Day in Stormont, Belfast, hosted by the Northern Ireland Rare Diseases Partnership. The theme of the event was "More than you can imagine: the power of connection and resilience".
James brings a unique perspective to our board and we are lucky to have his involvement.


Rare Diseases Day 2025

University of Auckland Chancellor's Circle induction

Article: Patient journey in cystinosis: focus on non-adherence and disease management