CYSTINOSIS IRELAND COMPANY LIMITED BY GUARANTEE

Cystinosis Ireland Company Limited By Guarantee is a charitable organisation dedicated to supporting families affected by the ultra-rare condition cystinosis. By providing a trusted community of knowledge and peer support, the charity helps newly diagnosed families navigate the challenges of the disease while fostering a network of shared experience across Ireland.

The organisation's work centres on three pillars: awareness, fundraising and research. It organises events such as the annual Dublin Cystinosis Workshop and the upcoming CNE International Conference in Dublin, creating platforms for researchers, clinicians and families to exchange ideas. Through targeted fundraisers-including the popular Ashbourne Golf Day-Cystinosis Ireland raises vital resources that are channelled into cutting-edge global research collaborations with DNA and stem-cell experts. As the secretariat for Cystinosis Network Europe, it also coordinates international efforts, having hosted the first virtual International Cystinosis Conference in 2020, which attracted participants from 49 countries.

Based in Dublin, Cystinosis Ireland serves families throughout the island, delivering hope through education, community engagement and a steadfast commitment to advancing a cure.