Cystinosis Ireland

Cystinosis Ireland is an Irish based and registered non-profit charity dedicated to providing services for those affected by Cystinosis. We were founded in 2003 by people and their families primarily affected by Cystinosis. The disease itself is a rare, degenerative, inherited disease in which the amino acid, cysteine, accumulates abnormally in all cells of the body due to a defective mechanism to transport it out of the cells. This in turn leads to an early cell death. Cystinosis therefore slowly destroys all the organs of the body; the kidneys, liver, eyes. muscles, pancreas, thyroid and the brain.   

The principle activities of Cystinosis Ireland are to raise awareness of Cystinosis, participate in fundraising events and invest all available monies into medical research with the aim of finding a cure for Cystinosis or alternatively improving existing treatments, and providing support and hope to those living with Cystinosis.