What is Cystinosis?

Cystinosis is an exceptionally rare condition characterised by the crystallisation of the amino acid cystine in various body organs and muscles. Cystinosis is an inherited disease occurring in about 1 in 200,000 births within developed countries.

With better understanding, earlier diagnosis and improved treatments, people with cystinosis are able to lead a long, full life. It is the Foundation's aim to strive for continued improvements, by informing and sharing across researchers and the cystinosis community.