Cystinosis Research Network (CRN)

The Cystinosis Research Network (CRN) is an all-volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. The CRN’s vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with cystinosis.

Cystinosis is a rare, genetic, metabolic, lysosomal storage disease that causes an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain. Cystinosis affects an estimated 2,000 people worldwide with just over 600 of those diagnosed living in the U.S.