News & Events

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”.

News 22/11/2023

€3million research funding!

Cystinosis Ireland marks 20 years of supporting the Irish cystinosis community and investing €3million in research funding

News 31/05/2023

2022 Preliminary organ donation figures

Today (29 December 2022) the HSE published the preliminary organ transplant figures for 2022 in Ireland. 

News 29/12/2022

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.

News 30/11/2022

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.

Fundraising 27/02/2023

Cathal’s Omagh Half Marathon!

Cathal Judge is taking on the challenge of the Omagh half marathon in April 2022. 

Fundraising 15/12/2021

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. 

Fundraising 05/08/2021

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.

Fundraising 15/07/2021

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

Fundraising, Events 01/10/2020