Moebius Syndrome Foundation Administration

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"See and hear about the shared experiences of children and adults with Moebius Syndrome"
 

The Foundation Mission

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.


Highlights

What is Moebius Syndrome?
What is Moebius Syndrome?

Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.

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NIH Moebius Research Study
NIH Moebius Research Study

There is a new collaborative effort amongst a team of researchers at Mount Sinai School of Medicine, Boston Children's Hospital and the National Institutes of Health to use genetic studies to identify disease-causing genes.

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New Oral Placement Therapy Study For children with Moebius syndrome ages 5 to 18
New Oral Placement Therapy Study For children with Moebius syndrome ages 5 to 18

A research study will take place to find out how Oral Placement Therapy helps improve facial expression, feeding abilities and speech production in children with Moebius syndrome. Recruitment begins July 2013.

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Events

12th Moebius Syndrome Conference
12th Moebius Syndrome Conference

The 12th Moebius Syndrome Conference will be held at the Long Beach Hilton, Long Beach (Los Angeles County), California, Friday July 15 – Sunday July 17, 2016.

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