Moebius Syndrome Foundation

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

The Foundation provides a newsletter, support groups and online support and resources. 

The Moebius Syndrome Foundation awards three (3) educational scholarships of $2,000 each, to individuals who have Moebius syndrome and will be attending an undergraduate college/university/ post-secondary vocational school. The 2018 scholarships have already been awarded. Look out for an announcement for the 2019 application in early 2019!


Connect with others
Online Groups
Facebook Groups

  • The Home for the Moebius Community
  • Moebius Moms  
  • Moebius Dads  
  • Moebius Grandparents 
  • Moebius Ladies  
  • Moebius Syndrome Technology  
  • Moebius Friends Chat Group  

You may want to search Facebook for other groups. We have partner organizations across the globe you may want to connect with. 

Other Groups

RareConnect — The Moebius Syndrome Community on RareConnect is a collaboration between international Moebius syndrome foundations and support groups by NORD and EURORDIS

Kinsights —

Research on Moebius syndrome has increased greatly in the last ten years.

Funding priorities of the Moebius Syndrome Foundation:

  1. To advance the diagnosis, treatment, and/or quality of life of people with Moebius syndrome and its associated conditions.
  2. To promote sustainable and comprehensive programs of research focused on Moebius syndrome by providing “seed funds” for larger research programs and grant submissions to larger funding organizations.
Contact email: 
Thu, May 14, 2020: 4:17 pm
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