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Latest Updates

News, Research 19/11/2024

Article: Patient journey in cystinosis: focus on non-adherence and disease management

News 30/10/2024

Novartis Community Statement October 2024

News 30/10/2024

Budget 2025 changes for carers

Support

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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Awareness

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

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Research

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 www.cystinosis-europe.eu.

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.