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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.
There is something special about talking with someone who understands your experience without needing it explained. For many people in the Moebius syndrome community, that kind of connection can be hard to find close to home. Moebius Connections is here to help close that distance.
Building on the mentorship and friendship program we first offered in 2022, we have redesigned Moebius Connections based on what we learned from you. The result is a program centered on personal, meaningful support that helps community members connect virtually, wherever they live.
Moebius Connections is open to individuals ages 13 and up in the Moebius syndrome community. Whether you are hoping to build a lifelong friendship, talk with a peer who understands, or find guidance as you navigate school and career decisions, there is a place for you here.
Whether you want to make a new friend, share your story, find a mentor, or be that support for someone else, we would love for you to join us.
Sign up for Moebius Connections
Know someone who might benefit? Please share this post with them. The more people who take part, the more opportunities there are for meaningful matches across our community.
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.
Rare Patient Voice is an online survey program where you can earn up to $120 per hour participating in paid surveys, interviews, and online communities about Moebius syndrome or other conditions. Caregivers with their own medical conditions can register for themselves in addition to their patient with Moebius syndrome.
If you are interested in finding out more about participating in a survey, please use the following link: https://rarepatientvoice.com/rp/moebiussyndromefoundation
When prompted to enter information on who referred you to the program, please enter: info@moebiussyndrome.org and the first name Moebius and last name Syndrome. The Moebius Syndrome Foundation will earn a donation for every referral received!
This program is open internationally and to non-U.S. residents. Please complete the form with your country (e.g. Australia, Canada, etc.) when you register.
Rare Patient Voice is on a mission to connect patients and family caregivers to paid medical studies and surveys, valuing the firsthand experiences of those living with various conditions. Currently, the Rare Patient Voice Community boasts over 100,000 patients and family caregivers, supported by over 4,000 Referral Partners.
Volunteer to help us add more content to this page! Email social@moebiussyndrome.org with your ideas.