We've funded research into cystinosis to the value of almost €2million in Ireland and worldwide.
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.
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.
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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.