Cystinosis Ireland is an all-Ireland organisation providing support to those living with cystinosis in Ireland and investing in the best research internationally.
Here to Help
We provide support and resources to families, medical professionals, educational professionals, researchers and others from the early stages of diagnosis through to adulthood.
We also share the experience of living with this ultra rare condition and promote understanding of its impact to the public, policy makers and anyone who wants to support us in supporting our community. For more information about any of our work, please visit our information and news channels below, or contact us.
Stay up to date with the Cystinosis community in Ireland across our social media platforms.
Visit our YouTube channel for videos of conferences and researchers talking about their work.
Youtube Channel
Visit our YouTube channel for videos of conferences and researchers talking about their work.
May 7th (5/7) and the 57kb Deletion for Cystinosis Awareness Day 2024
Meet the NIH Detective cracking medicine's toughest cases
Organ Donor Week 2024 - Irish Examiner
Human Tissue Bill enacted - 28 February 2024
Register now for the CNE International Conference 2024
Latest News
Cystinosis Ireland announces research valued at €600,000 co-funded with Health Research Board
Cystinosis Ireland is delighted to announce the joint funding of two research projects, valued at €600,000, in conjunction with the Health Research Board (HRB), which is Ireland's primary health research body funded by the Irish Government, as part of the HRB Joint Funding Scheme.
Tracey's challenges for cystinosis!
Support Tracey in taking on six for six in 2024!
Prof Roz Anderson Memorial Prize winnner 2024
Cystinosis Ireland is delighted to announce the winner of the 10th Annual Dublin Cystinosis Workshop, Professor Roz Anderson Memorial Awardto Sante Princiero Berlingerio of KU Leuven, Belgium presenting his work “Targeting oxidative stress-driven lipid peroxidation improves podocyte dysfunction in cystinosis”.