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.
Cystinosis Ireland is one of the main patient organisations in Europe driving research into this rare disease. Since its establishment in 2003, Cystinosis Ireland has supported research projects focused on all aspects of this disease to the value of €1.9 million either through direct funding or as a co-funding partner with Ireland’s national health research funding agency, the Health Research Board.