One of the most important aspects of Cystinosis Ireland is that we provide a community of support and knowledge to every family affected by Cystinosis.
We’re Here for you
These days with better understanding and earlier diagnosis, people with cystinosis are able to lead a longer, fuller life. Cystinosis Ireland is working to support research into better treatments and ultimately a cure for this condition. We also work to support people living with cystinosis and those who care for them.
What we’re doing
We and our colleagues throughout the world have developed many useful resources which you might like to look through. Please check out the links below and we would be happy to talk to you about anything that isn’t addressed in these publications.
All resources are linked below.
Parents Cystinosis Handbook by Cystinosis Research Network
Managing Cystinosis by Cystinosis Research Network
Animated Video: Cystinosis - causes, symptoms, diagnosis, treatment, pathology by Osmosis from Elsevier
Cystinosis in the Classroom
Tips for Starting School
Transition from teenager to adult by Cystinosis Research Network
An Easy guide to Rare Diseases in Ireland and Consensus for Action
Latest News
Cystinosis Ireland announces research valued at €200,000 co-funded with Health Research Board 2026
Cystinosis Ireland is delighted to announce the joint funding of a new research project to the value of €20,000, in conjunction with the Health Research Board (HRB), Ireland's primary health research body funded by the Irish Government, as part of the HRB Joint Funding Scheme.
CYStem clinical trial community update
Novartis CYStem clinical trial community update
Research Update: Development Of The First Human Cellular Model To Study Cystinosis Myopathy
Research summary of the first human muscle cell model for cystinosis myopathy