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What we do

Cystinosis Ireland works to serve and partner with patients and families of those living with Cystinosis in Ireland. Cystinosis Ireland is the only charity organization in Ireland working on behalf of the Cystinosis community.

Delivering HOPE through success

We've invested 1.9 million euro into research projects at home in Ireland, and all around the world.

Supporting 21 Patients in Ireland

1.9 Million toward Cystinosis research

We work with...

Family Support

There can be a sense of isolation when a rare disease is diagnosed. Our charity's founding members have experienced this and work to ensure that new families are not alone is our priority. For our existing members and adults with cystinosis we can offer support on an individual basis.

We are open and willing to listen to the needs of all the families who live with Cystinosis. If we can help, we will.

Fundraising

Due to the incredible rarity of this condition, large pharmaceutical companies will not invest in research or drug development, which is tremendously expensive, as they know they will not financially benefit from the investment. Therefore, all cystinosis related research being done world wide is almost exclusively funded by patient groups like Cystinosis Ireland.

We have been very successful to date attracting government funding through the MRCG/HRB Joint Funding Scheme. This scheme allows charities like Cystinosis Ireland to make an even greater impact with the donations we receive.

For ideas in hosting your own fundraiser, please email fundraising@cystinosis.ie

Research

The research we fund focuses on understanding the causes and progression of the disease, as well as finding new therapies. We currently fund research projects at Trinity College Dublin, University College Dublin, KU Leuven University in Belgium, The University of Auckland in New Zealand, and The University of Florida – Gainesville and the University of San Francisco in the United States.

The results from these research projects are shared with our families, funders, and other industry partners in an effort to raise awareness of scientific advancements in the field of cystinosis.

Need to talk?

Organise a call back from Cystinosis Ireland