Cystinosis Ireland

Founded in 2003, Cystinosis Ireland is a charity based in Dublin, Ireland working on medical research, health.

Cystinosis Ireland is a registered charity founded in 2003 by people living with cystinosis and their families, and is led by people with personal experience of the condition. It funds research into cystinosis, both directly and as a co-funding partner with the Health Research Board and sister organisations, with more than 3 million invested since its founding. It also supports people with cystinosis, their families, carers and healthcare and educational professionals across the island of Ireland, from diagnosis through to adulthood, and raises public awareness of this ultra-rare inherited metabolic disease. The charity hosts the annual Dublin Cystinosis Workshop and provides the secretariat for Cystinosis Network Europe. It is funded mainly by individual donations, fundraising and legacies.