Cystinosis is a rare, metabolic disease characterised by a build up of the amino acid, cystine, in organs and tissues, leading to severe organ dysfunction. In Cystinosis, the transporter for cystine is dysfunctional, causing a build up of cystine in the cells which then crystallise.

What Does it do?

The crystals quickly create toxic levels of cystine in the body, causing cellular dysfunction and even cellular death. Soft tissue and all organs are directly affected by this crystallisation, including the kidneys, eyes, liver, muscles, and central nervous system.

What Can we Do?

Cystinosis Ireland provides support and resources to families, medical professionals, researchers and others from the early stages of diagnosis through to adulthood.


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.

Learn More


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

Learn More


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.

Learn More

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