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
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”.
Human Tissue Bill 2022
Cystinosis Ireland, a member of the Irish Donor Network, warmly welcomes the passage of the Human Tissue Bill 2022 through the Dail. The Bill will now go to the Seanad for consideration. The passage of the Human Tissue Bill 2022 will allow for better regulation of human tissue use in Ireland and provides a comprehensive legal framework for the donation of organs for transplantation, including introducing “soft opt-out”.