News & Events
Article: Patient journey in cystinosis: focus on non-adherence and disease management
Novartis Community Statement October 2024
Budget 2025 changes for carers
Cystinosis Ireland announces research valued at €600,000 co-funded with Health Research Board
Cystinosis Ireland is delighted to announce the joint funding of two research projects, valued at €600,000, in conjunction with the Health Research Board (HRB), which is Ireland's primary health research body funded by the Irish Government, as part of the HRB Joint Funding Scheme.
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”.
€3million research funding!
Cystinosis Ireland marks 20 years of supporting the Irish cystinosis community and investing €3million in research funding
2022 Preliminary organ donation figures
Today (29 December 2022) the HSE published the preliminary organ transplant figures for 2022 in Ireland.
Cystinosis Ireland welcomes Cabinet approval of Human Tissue Bill, paving the way for soft opt-out organ donation
Cystinosis Ireland warmly welcomes the Cabinet approval of the Human Tissue Bill which will pave the way for soft-opt out organ donation.
Bill’s Marathon Challenge!
Hello all, my name is Bill Leacy, and I will run in the Los Angeles Marathon on 19 March in honour of my friend, Darren Barnes.
Cathal’s Omagh Half Marathon!
Cathal Judge is taking on the challenge of the Omagh half marathon in April 2022.
Jayden & Melody walk Hadrian’s Wall!
Jayden (8) and Melody (7) are part of a rag taggle group of 13 who will be walking 85 miles, the length of Hadrian’s Wall, to raise funds for Cystinosis Ireland.
Claire, Donal and Brin’s walk to Temple Street
As many of you know our beautiful baby boy Brín was diagnosed with a very very rare disease called Cystinosis just last August.
Super Mario Powers: A Rare 10km for a Cystinosis Cure
It is so incredibly important to us to find a cure for cystinosis. We want to raise vital funds and bring some fun at the same time so Mario, Luigi & Yoshi