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
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
Management Cystinosis by the Cystinosis Research Network
Eurogen Test Leaflets
Information prescription for patients with Cystinosis (UK)
An Easy guide to Rare Diseases in Ireland and Consensus for Action
Transition from teenager to adult