Moebius syndrome is a rare, congenital (present from birth) disorder defined by the partial or complete absence of the 6th and 7th cranial nerves, which control eye movements and facial expression. Individuals with Moebius Syndrome have no facial expression (cannot smile), have little or no eye movement and sometimes have underdeveloped limbs. The causes of Moebius are unclear, but there are suspected genetic, teratogenic (harmful substances) and environmental factors which may contribute to Moebius syndrome. Moebius is a complex disorder, and its treatment involves medical disciplines as diverse as neurology, ophthalmology, dentistry, genetics, epidemiology, toxicology, reconstructive surgery, developmental pediatrics, psychiatry as well as physical, occupational, and speech therapy. As an extremely rare disorder that touches many medical disciplines, Moebius syndrome does not currently benefit from a cohesive, multidisciplinary scientific community dedicated to research on this disorder. The purpose of this project is to convene the first ever Scientific Conference on Moebius Syndrome which will bring together the leading researchers involved in studying the many aspects of Moebius syndrome from around the world. The scientific goals of the conference will be to: Summarize the state of science in each relevant scientific discipline (epidemiology, genetics, etc.); Stimulate interdisciplinary research, and Establish a community of interest among the diverse scientific communities engaged in basic and clinical research related to Moebius syndrome. The outcome of the conference will be to establish clear processes for achieving the following essential tasks: To develop and standardize: The accepted diagnostic criteria of Moebius syndrome; Clinical measures for examining patients with Moebius syndrome; Epidemiologic questionnaire for patients with Moebius syndrome; Clinical and epidemiologic databases for Moebius syndrome research; Methodologies to determine environmental factors/teratogens/genes which may contribute to the etiology of Moebius syndrome. A primary outcome measure of the Conference will be to author and publish in a peer reviewed journal a report to serve as a definitive document describing the current state of knowledge of Moebius syndrome across major scientific disciplines and to outline research priorities for the future. The Scientific Conference on Moebius Syndrome is devoted to furthering research and creating a more cohesive research community for Moebius syndrome. As researchers and clinicians learn more about the causes of Moebius syndrome, this knowledge will enhance public health and patient treatment for those with Moebius syndrome and those suffering from other forms of facial palsy and other neurodegenerative disorders. ? ? ?
