Who We Are
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
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 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 2021 (including audited accounts) can be read here.
Our Patron is the oscar nominated actor Stephen Rea.