Latest Updates

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”.


One of the most important aspects of Cystinosis Ireland is that we provide a community of support and knowledge to every family impacted by Cystinosis.

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We hold events and fundraisers to support individuals and families affected by Cystinosis, addressing immediate needs and advancing future research.

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We back global cutting-edge Cystinosis research, collaborating with DNA and Stem Cell experts, making us a prominent partner in the global fight for a cure.

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Dublin Cystinosis Workshop

The Annual Dublin Cystinosis Workshop is an interactive forum for researchers to share new knowledge, spark new ideas and explore new research approaches aimed at better understanding and treating the ultra-rare disease of Cystinosis.

International Work

Cystinosis Ireland hosts and provides the secretariat to Cystinosis Network Europe (CNE), the international network of cystinosis support and research investing organisations. You can find full details of CNE's work at

In 2020 Cystinosis Ireland hosted the first ever Virtual International Cystinosis Conference 2020 on 25 April 2020 and attracted an audience of more than 600 participants from 49 different countries in 20 time zones across the world.