Many people living with Moebius syndrome have experienced struggles physically and emotionally. Moebius syndrome forces individuals to cope with physical limitations and find ways to grow “thicker skin” as they face rejection, loss, and an ableist society.
The Moebius Syndrome Foundation strives to provide you with a sense of belonging and a safe place to work through these challenges. We, as a community, know you are capable of amazing things. Individuals with Moebius syndrome are talented and can strive for careers and dreams no one else believed you were capable of.
The following pages provide resources for your emotional and physical health, and for navigating dating and careers. Additional reading about living with a facial difference is also included.
When you’re meeting someone new, when do you disclose your facial difference? How do you disclose at work or when on a date? Dr. Kathleen Bogart, Ph.D., associate professor of psychology at Oregon State University, explored this topic with her research. In this video, she helps us understand how people address their facial difference and what approaches are associated with better outcomes and better mental health.
RareConnect — The Moebius syndrome community on RareConnect is a collaboration between international Moebius syndrome foundations and support groups by NORD and EURORDIS. RareConnect will become view only on Dec. 1, 2023.
Volunteer to help us add more content to this page! Email social@moebiussyndrome.org with your ideas.