The Cystinosis Research Network 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 vision of the Cystinosis Research Network is the discovery of improved treatments and ultimately a cure for Cystinosis.
Cystinosis is a rare genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine.
The Cystinosis Research Network provides family assistance through facilitating several support groups as well as hosting a family conference every other year. At this conference, families and the medical community join together in hopes to accelerate the accomplishment of stated goals and objectives.