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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

News, Events 10/04/2025

Cystinosis Ireland to host 2026 international conference

Save the date for the 2026 CNE International Conferee in Dublin!

News, Research 04/04/2025

Now enrolling: Phase I/II CYStem clinical trial

News 03/03/2025

Rare Diseases Day 2025