• We support research

    The Moebius Syndrome Foundation is committed to funding research into the cause of Moebius syndrome and its associated conditions. Learn More »
  • Scholarship Winners Announced

    Congratulations to the Recipients of the 2019 Moebius Educational Scholarship! The awardees include: Kelly Mercier, Alli Johnson, Heaven Cranford, Ian Linn, Jessica Maher, and Zayne Herron
  • 2020 Moebius Syndrome Conference in Minneapolis, Minnesota

    Join us to learn about the latest scientific advances, educational sessions, medical consultations with the nation’s leading physicians and social activities. Learn More »
  • Moebius Syndrome Foundation’s 25th Anniversary

    The Moebius Syndrome Foundation is celebrating its 25 years of community in 2019!
  • Dr. Bryn Webb and Vicki McCarrell wrote and article for the Rare Neurological Disease Special Report supplement for Neurology Reviews to help raise awareness about Moebius Syndrome and the Moebius Syndrome Foundation. You can read the article here.
  • Spring 2019 Newsletter

    Upcoming conferences, scholarship deadlines, and the highlights from Moebius Syndrome Awareness Day are all included in the Spring 2019 newsletter. Read it here »
  • Ft. Worth Moebius Mini-Conference

    Join us on November 8-9, 2019 for Ft. Worth Mini-Conference! Adult Meet-ups, Educational Sessions, Lots of Networking, and Family Friendly Activities in what is known as “Cow Town.”Learn More>>
  • Fall Newsletter 2018

    Our 2018 Fall Newsletter is now available. Included is our new Board of Directors, a wrap up of our conference, and a list of our generous donors. Read the newsletter here »
  • Educational Scholarships Awarded!

    We are excited to announce that the Moebius Syndrome Foundation has awarded six young people with Post-Secondary Educational Scholarships! Read more.
  • Moebius Syndrome Foundation Conference

    A huge thank you to all who attended our 2018 event! View photos, slideshow and presentations from the 13th Moebius Syndrome Foundation Conference here »
  • 1
  • 2
  • 3
  • 4
  • 5
  • 6
  • 7
  • 8
  • 9
  • 10


The Moebius Syndrome Foundation's mission 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.

For Parents

Was your newborn recently diagnosed with Moebius syndrome? Have an older child with Moebius?

For Professionals

Healthcare professionals, researchers and those who want more information on Moebius, click here »

For Adults and Young Adults

Interested in getting involved or connecting with others living with Moebius?
Learn more »

For Friends and Relatives

Learn about Moebius syndrome and ways you can support your loved one.
Learn more »

Facebook Twitter Vimeo LinkedIn Instagram

Eidikology: proposition for a new terminology for the science of rare diseases

Posted by Moebius Foundation
The European Union defines a disease as rare when it affects fewer than 5 per 10 000 persons,1 whereas the USA considers a condition rare if it affects fewer than 200 000 individuals.2 To date, however, there is no terminology to appropriately address these diseases as a category other than rare diseases, or in some instances orphan diseases when referring to conditions that lack the resources for treatment discovery. Even though these terms have helped thus far to describe ...READ MORE »

Campaign for face equality ‘becomes a global movement’ with the first International Face Equality Week

Posted by Moebius Foundation
MEDIA RELEASE: For Friday 17th May 2019 Campaign for face equality ‘becomes a global movement’ with the first International Face Equality Week The Moebius Syndrome Foundation is pleased to announce a week of awareness-raising events, media coverage and social media activity begins around the world today to promote ‘Face Equality’ — the fair treatment of people with facial and body differences and the elimination of disfigurement discrimination. The 30 NGOs that are members of Face Equality International, the new alliance representing people ...READ MORE »