Moebius Syndrome Foundation

A nonprofit organization

6 donors

Welcome to the Moebius Syndrome Foundation!

Moebius syndrome is a craniofacial / neurological disorder that manifests itself primarily in facial paralysis.  Individuals with Moebius syndrome cannot smile or frown, and do not have lateral eye movements.  Many individuals with Moebius syndrome also have limb abnormalities, respiratory problems, speech and swallowing disorders, and other complications that impact health and well being.

In the late 1880's a German physician, Paul Julius Moebius MD, described the rare neurological condition of a man who had no facial expression, could not blink his eyes and could not move his eyes laterally.  For over 100 years relatively little was known about this condition. 

In the early 1990's some adults with Moebius syndrome and parents of children with Moebius syndrome came together to provide information and networking for people with Moebius syndrome.  The Moebius Syndrome Foundation was formed in 1994, the year of our first national conference.

Since that time, the Moebius Syndrome Foundation has grown tremendously, thanks to the Internet and networking by parents and adults with Moebius syndrome.  We hold conferences in major cities in the US every two years attended by hundreds of individuals and families.  Our next conference will take place July 15 - 17, 2016 in Los Angeles. 

For over 20 years we have published newsletters that we send to people all over the world.  Let us know if you want to be added to our mailing list.

We are supported by a brilliant and caring Scientific Advisory Board.  We are incredibly excited with the research that is now being conducted on the genetic cause(s) of Moebius syndrome.  A collaborative effort is now taking place with researchers at the National Institutes of Health, Boston Children's Hospital and Mount Sinai Medical Center. 

We are excited to continue and expand our organization to reach more people involved with Moebius syndrome, both families and adults and professionals who work with children and adults with Moebius syndrome.

Moebius Syndrome Awareness Day takes place every year of January 24th, the birthday of Dr. Moebius.  On that day many adults and families hold get-togethers or other events that help us educate about Moebius syndrome.  Check our Facebook page for the unique efforts from our recent Moebius Syndrome Awareness Day.

Please contact us for more information.  We are always available to hear from people and want to share information.


Organization Data


Organization name

Moebius Syndrome Foundation

Tax id (EIN)



PO BOX 147


8784 236 644