Cystinosis Ireland was founded in 2003 by those living with Cystinosis and their families and continues to be led by people with personal experience of living with cystinosis. Our goals remain the same since our foundation – to invest in research, raise awareness and provide support. We invest in research internationally to ensure the best minds are doing the best work. We are based in Dublin but provide support online and in person throughout Ireland and Northern Ireland as well as supporting patients internationally where no local organisation exists. Cystinosis Ireland hosts the annual Dublin Cystinosis Workshop and provides the secretariat for Cystinosis Network Europe, the international network of cystinosis patient organisations.