Research | Awareness | Support
We provide support and resources to families with cystinosis, from the early stages of diagnosis through to adulthood. We also have information for healthcare and other professionals supporting people with cystinosis as well as for researchers focused on a diverse range of cystinosis research topics.
Most research into cystinosis is funded by patient groups like Cystinosis Ireland. Find our more about the Annual Dublin Cystinosis Workshop, the research projects we support and how to access our research funding opportunities here.
All of our public fundraising is spent on research into treatments and potential cures for cystinosis. Support a fundraiser, or start your own – we can help and guide you through whatever new idea or tried and trusted event you plan.
Cystinosis Ireland holds the chair of Cystinosis Network Europe and the secretariat of the Worldwide Cystinosis Community Advisory Board. We were proud to host the 2020 Virtual CNE International Conference.
We’ve supported research projects focused on all aspects of this disease to the value of €2.6 million either through direct funding or as a co-funding partner.
2022 Preliminary organ donation figures