Cystinosis Ireland is an all-Ireland organisation providing support to those living with cystinosis in Ireland and investing in the best research internationally.

Here to Help

We provide support and resources to families, medical professionals, educational professionals, researchers and others from the early stages of diagnosis through to adulthood.

We also share the experience of living with this ultra rare condition and promote understanding of its impact to the public, policy makers and anyone who wants to support us in supporting our community. For more information about any of our work, please visit our information and news channels below, or contact us.