Our Programs

Our Programs

Moebius Syndrome Conferences provide a place for individuals and families with Moebius syndrome to connect. Each conference offers a different line-up of professional speakers. Topics include updates on scientific research, emotional support, and general education on Moebius syndrome. Children are welcome to attend with their caregivers.

Moebius Syndrome Awareness Day is an annual event celebrated globally each year on January 24th — the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888.

In 2011, Moebius Syndrome Awareness Day was started by the Many Faces of Moebius Syndrome and has been embraced globally by other organizations that support efforts to raise awareness. The Moebius Syndrome Foundation celebrates #MSAD by sharing information about Moebius syndrome, offering financial support and resources to approved events, encouraging people to wear purple, and raising awareness through various means and channels.

Are you hosting an awareness event, at any time during the year? Please let us know the details and we will post them on our website! Email information and event pictures to jenny@moebiussyndrome.org

Rare Disease Day is the one-of-its-kind international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. Each year, the Moebius Syndrome Foundation partners with the National Organization for Rare Disorders, the U.S. Official Sponsoring Organization. 

The Moebius Syndrome Foundation (MSF) encourages people to host informal gatherings in their area. Local gatherings provide important support and connections to those in the Moebius syndrome community. They provide information and support to individuals with Moebius syndrome and their families and promote greater awareness and understanding of Moebius syndrome.

Would you like to attend an upcoming gathering? Each event is hosted by members of the Moebius syndrome community.  If you are hosting an event and want to have your event featured, e-mail info@moebiussyndrome.org.

Every day we provide free, online networks for you to easily connect with individuals and families from across the globe.

The Home for the Moebius Community

Moebius Moms and Dads

Moebius Grandparents Group

Moebius Ladies

Moebius Friends Chat Group

You can also find us on Facebook, Instagram, Twitter, and LinkedIn under the Moebius Syndrome Foundation.





RareConnect — The Moebius Syndrome Community on RareConnect is a collaboration between international Moebius syndrome foundations and support groups by NORD and EURORDIS www.rareconnect.org/en/community/moebius-syndrome