Researchers at Oregon State University are conducting a study on facial appearance and injustice awareness. Are you: Someone with a condition, illness or injury that affects the way your face looks (ie cleft lip, facial paralysis, birthmark) 18 years or older Able to communicate in English If so, researchers from Oregon State University want to...

The recordings from Spotlight on the Future: A Webinar Series for Families with Sean Roy are available for a limited time on our website. Sean Roy is the Chief Innovation and Training Officer at TransCen. This is a two-part webinar series, and we encourage families to watch both sessions for the fullest experience. However, each...

Moebius Syndrome Foundation Partners with NORD® to Initiate Natural History Study of Moebius syndrome Denver, Colorado, October 3, 2025 — The Moebius Syndrome Foundation (MSF) has partnered with the National Organization for Rare Disorders (NORD) to plan and build a study to research Moebius syndrome. “As a mother of a child with Moebius syndrome and...

Share Your Story and Help Improve Healthcare for the Moebius Community! Researchers at the University of Wisconsin–Madison are conducting a study to better understand the healthcare experiences of people with Moebius syndrome. The team is looking to interview adults (18+) with Moebius syndrome and caregivers of children under 18 with Moebius syndrome. Interviews are conducted...

Apply now to join us as a speaker at the next Scientific Research Symposium in Salt Lake City, UT! The Moebius Syndrome Foundation is currently seeking proposals from researchers and physicians to discuss advancements in scientific and medical understanding of Moebius syndrome. If you would be interested in attending and/or presenting at the next Scientific...

The Moebius Syndrome Foundation is thrilled to announce that research funded by the Foundation has been published in the prestigious Nature Genetics research journal. The genetics researchers from Boston Children’s Hospital, the National Institutes of Health, and the Icahn School of Medicine at Mount Sinai partnered with the Moebius Syndrome Foundation with the aim to...

The Moebius Syndrome Foundation funded research into when and how someone should disclose a facial difference. The research, led by Dr. Kathleen Bogart, revealed that most individuals with facial differences opted to disclose their condition to others. More than half of participants disclosed their facial difference on the job. Personal disclosure resulted in more positive...

The Moebius Syndrome Foundation is currently conducting research into sleeping disorders, as well as a psychological study about the experiences of informing people about a facial difference. We invite the Moebius community to help make these studies successful by participating in online surveys for each topic. For more information, please review the following flyers: Facial...