About Moebius Syndrome Association
The Moebius Syndrome Association is an international, non-profit organization in Canada dedicated to providing information, assistance, and support to affected families. Moebius syndrome is an extremely rare developmental disorder characterized by incomplete development of certain nerves arising from the brain (sixth and seventh cranial nerves), resulting in eye muscle and facial paralysis and/or other symptoms and findings. The disorder is thought to be genetic and is apparent at birth (congenital). The Moebius Syndrome Association was established in 1997 and currently consists of approximately 900 affected families worldwide. The association is committed to increasing public and professional awareness of Moebius syndrome, promoting research, engaging in-patient and professional education, and offering networking opportunities to affected families. In addition, the association links individuals and families to support groups throughout the world, engages in lobbying, has a directory, and provides a variety of educational materials including pamphlets, reports, and a regular newsletter and has a web site.