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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?

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For Adults and Young Adults

Interested in getting involved or connecting with others living with Moebius?
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For Friends and Relatives

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