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 for 2018 can be read here.