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

We’re Here for you

These days with better understanding and earlier diagnosis, people with cystinosis are able to lead a longer, fuller life. Cystinosis Ireland is working to support research into better treatments and ultimately a cure for this condition. We also work to support people living with cystinosis and those who care for them.

What we’re doing

Our colleagues throughout the world have developed many useful resources which you might like to look through. Please check out the links below and we would be happy to talk to you about anything that isn’t addressed in these publications.


All resources are linked below.

Family Resources

Latest News

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”.

News 31/05/2023

€3million research funding!

Cystinosis Ireland marks 20 years of supporting the Irish cystinosis community and investing €3million in research funding