Cystinosis Research Network Incorporated

The organization raises awareness and reinforces strong relationships through representation at national medical conferences, affiliation with other organizations, publication of periodic newsletters and awards or educational scholarships to individuals with cystinosis and their siblings.

The organization provides information and opportunities to network for individuals with cystinosis and their families through participation in a biennial conference on cystinosis. It also supports newly diagnosed and existing families by providing access to world experts via advisory boards, moderation of an email support group and information packets.