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.

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Visit our YouTube channel for videos of conferences and researchers talking about their work.

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Youtube Channel

Visit our YouTube channel for videos of conferences and researchers talking about their work.

Visit Channel
Cystinosis and related news
    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

News, Fundraising 25/06/2024

Tracey's challenges for cystinosis!

Support Tracey in taking on six for six in 2024!

Workshops, News 13/05/2024

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”.

News 22/11/2023

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”.