About

Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine. As treatments have improved, children can now live into adulthood and live productive lives.

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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. We are a private, nonprofit 501(c)(3) corporation, Federal Tax ID 04-3323789.

The Cystinosis Research Network'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. Our commitment to our community lies in our tireless efforts to provide family assistance through facilitating several support groups as well as hosting a family conference every other year. At this conference we bring families and the medical community together in hopes to accelerate the accomplishment of our stated goals and objectives.

Our hope is that you find this website informative and compelling. A cure for Cystinosis can only be found through a highly cooperative approach that involves those afflicted by the disease, their families, and the medical community.