The 2025 Moebius Syndrome Foundation Conference took place last month in Salt Lake City, Utah. This international scientific and family gathering, held every two years, brought together approximately 200 individuals with Moebius syndrome, their families, and clinicians and researchers from around the world. Moebius syndrome is a rare congenital neurological disorder characterized by facial paralysis (inability to smile) and abnormal eye movements.
Bryn Webb, MD, associate professor in the Division of Genetics and Metabolism, directed the Scientific Symposium and delivered five presentations over the four-day event. At the Scientific Symposium and family conference, Webb presented findings from a large 10-year study of the genetics and phenotype of Moebius syndrome recently published in Genetics in Medicine Open. She also announced the launch of the new Moebius Syndrome Foundation Research Registry, which is sponsored in partnership with the National Organization of Rare Disorders. Webb serves as Principal Investigator for the registry. This secure, patient-reported registry will collect detailed health, genetic, and lived-experience data from individuals with Moebius syndrome worldwide. By centralizing this information, the registry aims to accelerate research, facilitate collaboration among scientists and clinicians, and ultimately improve diagnosis, care, and treatment for those affected. While in Salt Lake City, Webb also gave a continuing medical education (CME) lecture on Moebius syndrome at the University of Utah.
