Cystinosis Foundation, Inc.

About Cystinosis Foundation, Inc.

The Cystinosis Foundation (CFR) is a non-profit, self-help organization dedicated to providing information and support to individuals affected by cystinosis, a rare inherited lysosomal disorder characterized by the abnormal accumulation of cystine crystals in tissues throughout the body, which may cause certain organs to malfunction. Three main forms of cystinosis are recognized: infantile nephropathic cystinosis, adolescent cystinosis (also called intermediate or juvenile cystinosis), and adult cystinosis (also known as benign cystinosis). Established in 1983, the Cystinosis Foundation is committed to raising awareness of the disorder in the medical and research communities and the public. The foundation offers support to affected individuals and their families; provides appropriate referrals; engages in patient, family, and professional education; and promotes and supports research. The Cystinosis Foundation provides a directory and a regular newsletter, which includes medical updates, editorials, member feedback, and listings of literature concerning cystinosis.