Coffin-Lowry Syndrome Foundation

The Coffin-Lowry Syndrome Foundation (CLSF) is a national, non-profit, self-help organization that functions as a clearinghouse for information on Coffin-Lowry syndrome and as a general forum for exchanging experiences, advice, and information with other families affected by this rare disorder. Coffin-Lowry syndrome is a genetic disorder characterized by dysmorphic facial features, mental retardation, speech delays, and musculoskeletal abnormalities. Founded in 1991, the Coffin-Lowry Syndrome Foundation seeks to become a visible group in the medical, scientific, educational, and professional communities to facilitate referrals of newly diagnosed individuals and to encourage medical and behavioral research aimed at improving the quality of life and methods of social integration for people with Coffin-Lowry syndrome. The organization maintains a mailing list of families affected by Coffin-Lowry syndrome and publishes a parent newsletter.