Who We Are
Our vision
We strive for a cure for cystinosis. Until then, we want people with cystinosis to live the best life they can.
Our mission
We exist to raise awareness about cystinosis, support those affected by cystinosis, and invest in quality cystinosis research.
Our values
Empathy, determination, collaboration, innovation, integrity, professionalism
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.
Our goals remain the same since our foundation – to fund research, raise awareness and provide support. We are based in Dublin but provide support online and in person throughout Ireland and Northern Ireland. We fund research internationally to ensure the best minds are doing on the best work.
We are a registered charity under the Charities Act 2015.
We provide support and resources to families, medical professionals, researchers and others from the early stages of diagnosis through to adulthood.
Our annual report 2020 can be read here. Our financial statements can be downloaded lower down on this page.
Our People
Mick Swift
Industry professional and long time supporter of the charity, offering his knowledge and expertise to the executive committee.
Sue Maguire
Mother to two adults with cystinosis and founding member of the charity.
Liam McFadden
Industry professional and long time supporter of the charity, offering his knowledge and expertise to the executive committee.
Andy Maguire
Father to two adults with cystinosis and founding member of the charity.
Rachael Reilly
Industry professional offering her expertise to the executive committee.
Anne-Marie O’Dowd
Mother to a child with cystinosis and founding member of the charity.
James Ennis
Person living with cystinosis and Northern Ireland representative.
Tom McDonald
Industry professional offering his expertise to the executive committee.
Niamh O’Brien
Family representative.
Denise Dunne
Operations Manager.
Tracey McCauley
Research Manager.
Stephen Rea
Our Patron is the oscar nominated actor Stephen Rea.
We are proud members of
Financial Statements
Cystinosis Ireland is committed to being open and transparent. All of our audited financial accounts are published here. We welcome questions or comments on any aspect of our governance practice.
Cystinosis Ireland is proudly working towards full compliance with the Charitis Regulator Governance Code.
Audited Financial Statements
