Cystinosis Ireland marks 20 years of supporting the Irish cystinosis community and investing €3million in research funding

Cystinosis Ireland is an all-Ireland organisation supporting people living with cystinosis and their families.  A significant and important part of our work is funding research to understand the disease, improve therapies and ultimately to find a cure.  We are proud to announce that since its establishment in 2003, Cystinosis Ireland has supported research projects focused on all aspects of this disease to the value of €3 million either through direct funding or as a co-funding partner. This funding has come through the incredible hard work of our community – fundraising events, challenges, sponsorships – and partnerships with the Health Research Board (Ireland’s state agency which supports and funds health and social care research) and our sister organisations, notably Cystinosis Research Network (US) and Cystinosis Foundation UK.  The research we fund meets rigorous peer review standards and is undertaken by world-class research teams internationally. Partnering with co-funders allows Cystinosis Ireland to have a greater impact with the funds we have to invest by effectively doubling the investment value.

Our €3million investment has funded projects in world leading research institutions from New Zealand to California, and covering topics from basic science which help lead to a greater understanding of what cystinosis is and how it affects the body’s cells; to investigating potential therapies which work in different and possibly more effective ways. Investment in research for rare diseases has also positive knock on effects for understanding and treating some more common conditions.  Our Seedcorn research funding scheme is also crucial to allow investigators to develop preliminary ideas and data and to establish proofs of concepts in new research areas.  Our €3million investment covers projects across all points on this spectrum.

You can see a selection of the projects we have funded here.

As we reach this significant milestone for our organisation and we would like to take this opportunity to thank, most sincerely, everyone who has been involved in the journey so far: our dedicated board and committee members, the clinical and research teams who undertake the work, and the members of our community who give their time, energy, enthusiasm and skills to raise awareness of and funds for the research in which we invest.

We always like to remind our supporters that Cystinosis Ireland effectively has no overheads as all our expenses are sponsored by a very generous donor. This ensures that all funds raised go into supporting people with cystinosis and their families and research related to cystinosis. Details of how we raise and spend funds is presented in our Audited Financial Statements, available in the Who are we section of our website.

You can join our incredible supporters and help us get to €4million by clicking here!

Picture of Cystinosis Ireland DCW and family weekend attendees 2023 holding a sign with 3 million indicating the amount of funding raised for research in 20 years. The group of adults and children are all wearing yellow tshirts