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.
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.