Cystinosis Research Network

The Cystinosis Research Network is an all-volunteer, private non-profit corporation dedicated to supporting & advocating research, providing family assistance & educating the public & medical communities about cystinosis.

The Cystinosis Research Network is comprised of volunteers representing every aspect of the cystinosis community. Our Board of Directors is made up of parents and individuals with cystinosis who are dedicated to making a difference in the lives of those affected by this disease. Committee volunteers include parents, siblings, individuals with cystinosis, extended family and friends. Formed in 1996 with the vision of one family has now grown to hundreds.