The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, to promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research that advances the diagnosis and treatment of Moebius syndrome and its associated conditions.
The Moebius Syndrome Foundation was founded in the 1990s by several parents of children with Moebius syndrome. Adults with Moebius syndrome soon joined their efforts, and the organization evolved from a support group to a national nonprofit. The founders included Vicki McCarrell, Lori Thomas, Kathi Campbell, and Rich Campbell.
The first national conference took place in Los Angeles in 1994 and the 501(c)3 was granted later that year. The Scientific Advisory Board was created in 1998.