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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.

Photographs from Rare Diseases Day 2025 event in Stormont, Belfast.  Main picture is of James Ennis standing in front of a Cystinosis Ireland pull up banner and information table. Other photos include a picture of the front of Stormont, title slides from the day and the cystinosis Ireland information desk
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