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
Latest News
Tracey's challenges for cystinosis!
Support Tracey in taking on six for six in 2024!
Prof Roz Anderson Memorial Prize winnner 2024
Cystinosis Ireland is delighted to announce the winner of the 10th Annual Dublin Cystinosis Workshop, Professor Roz Anderson Memorial Awardto Sante Princiero Berlingerio of KU Leuven, Belgium presenting his work “Targeting oxidative stress-driven lipid peroxidation improves podocyte dysfunction in cystinosis”.
Human Tissue Bill 2022
Cystinosis Ireland, a member of the Irish Donor Network, warmly welcomes the passage of the Human Tissue Bill 2022 through the Dail. The Bill will now go to the Seanad for consideration. The passage of the Human Tissue Bill 2022 will allow for better regulation of human tissue use in Ireland and provides a comprehensive legal framework for the donation of organs for transplantation, including introducing “soft opt-out”.