The Virtual International Cystinosis Conference went online on Saturday 25th April 2020 – a first for the global cystinosis community
1 day – 8 languages – 15 speakers – 20 time zones – 49 countries – 900 registered attendees! Thank you to all who joined us.
You can find details of the conference, including playback of the sessions, here. #virtualcystinosis2020
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.
Latest Bulletin
We’ve funded research into cystinosis to the value of almost €2 million in Ireland and worldwide.
Cystinosis Ireland can help you achieve real Public and Patient Involvement (PPI)
/in General News, Latest Bulletin, Research /by cystinosisireland