Cystinosis Ireland was founded in 2003 by those living with Cystinosis and their families. The organisation continues to be led by people with personal experience of living with cystinosis.
We strive for a cure for cystinosis. Until then, we want people with cystinosis to live the best life they can.
We exist to raise awareness about cystinosis, support those affected by cystinosis, and invest in quality cystinosis research.
Empathy, determination, collaboration, innovation, integrity, professionalism
Research, Awareness, Support
Our goals remain the same since our foundation – to invest in research, raise awareness and provide support. We are based in Dublin but provide support online and in person throughout Ireland and Northern Ireland. We invest in research internationally to ensure the best minds are doing the best work.
Cystinosis Ireland works to achieve the highest standards in all the work we do. In 2020/21 we undertook a significant strategic and governance review to see where our organisation was working well and where we had gaps to fill. As a result of this, and in consultation with our families, supporters, peer organisations and others, we developed a strategic plan and set up dedicated sub committees to achieve our aims. You can see an outline of the way the organisation works on this graph. We are working towards full compliance with Code by the end of 2024.
We are a registered charity under the Charities Act 2015. Charities Regulatory Authority Number: 20053796; CHY Company Number: 371955; CHY15517
Andy Maguire
Father to two adults with cystinosis and founding member of the charity.
Anne Marie O'Dowd
Mother of an adult with cystinosis and founding member of the charity.
James Ennis
Adult living with cystinosis and Northern Ireland representative.
Karen McCullagh
Mother of an adult with cystinosis.
Liam McFadden
Industry professional and long time supporter of the charity, offering his knowledge and expertise to the executive committee.
Mick Swift
Chairperson of the board. Industry professional and long time supporter of the charity, offering his knowledge and expertise to the board.
Rachael Reilly
Industry professional and long time supporter of the charity, offering her knowledge and expertise to the board.
Sue Maguire
Mother of two adults with cystinosis and founding member of the charity.
Tom McDonald
Industry professional and long time supporter of the charity, offering his knowledge and expertise to the board.
Denise Dunne
Operations Manager and Company Secretary
Tracey McCauley
Research Manager
Stephen Rea
The Oscar nominated actor Stephen Rea has been our Patron since 2007.
Annual Report 2023
Annual Report 2022
Annual Report 2021
Annual Report 2020
Annual Report 2019