Cystinosis Research Foundation

The Cystinosis Research Foundation (CRF) is a voluntary organization whose mission is to find better treatments and a cure for cystinosis. CRF has reached out to the cystinosis community by forging bonds of support and friendship, raising awareness and improving education about cystinosis. CRF funds research studies and cystinosis research fellows in six countries around the world. The research is focused on improving the quality of life and finding a cure for those with cystinosis. Cystinosis is a rare genetic disorder characterized by the impaired transport of the amino acid cystine out of parts of cells called lysosomes in many organs of the body including the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Lysosomes are membrane bound particles within cells that aid in the breakdown of cellular substances, some of which are harmful. Cystine crystallizes in these cells and slowly destroys the organs.