Moebius syndrome community

Moebius syndrome is a rare neurological condition resulting in facial paralysis that may include respiratory, eye, limb, speech, hearing and other disorders. 

Chelsey by Chelsey published about 1 month ago


I have experienced the pain of words as far back as elementary school.Upon realizing I was "different" from them, some select six and seven year olds made it their sole purpose at recess to stare, laugh, whisper and point at me. Phrases like "Small Hands" and "Four Fingers" seemed to be their weapon of choice. I was well aware of the fact that I had smaller hand...

Moebius Syndrome France at the March for Rare Diseases in Paris by Laurent ECOCHARD published about 1 month ago


Like every year, twenty adults and children represented Moebius syndrome in March for Rare Diseases, held in Paris. This year's walk was held on Saturday, December 3 during the 25th edition of the Telethon. We enjoyed the opportunity to celebrate five-years of Moebius Syndrome France participating in the march and as a Member Associations of the French Alliance for Rare Diseases. 

Moebius Syndrome Education by Moebius Syndrome Foundation published about 1 month ago


Video copyright, Moebius Syndrome Foundation, 2006.

2010 Moebius Syndrome Conference Slideshow by Moebius Syndrome Foundation published about 1 month ago


A slideshow compiled by the Moebius Syndrome Foundation.

Patient groups

  • Moebius Syndrome Foundation

  • Many Faces of Moebius Syndrome

  • Assoc. Syndrome Moebius France

  • Moebius Syndrome Australia

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Moebius syndrome Recent Activity

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    Conference Fundrasing
    topic, published about 14 hours ago

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    Submitted by Monica Woodall

    Our daughter Madison was born on June 6, 1999 with Moebius syndrome. In addition to feeding issues, she had bilateral club foot. At three months old, Madison underwent the Nissen Fundiplication procedure to address reflux and had a G-tube placed for supplemental f...

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    Future plans
    topic, published 15 days ago

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    After the success of Moebius Syndrome Awareness Day, what are your plans for Rare Disease Day?

    Need any ideas?

    Check here: http://eepurl.com/jAD0f

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    Local Man Reaches Out To Others With Rare Disorder
    topic, published 22 days ago

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    http://blogs.fredericksburg.com/healthyliving/2012/02/17/local-man-reaches-out-to-others-with-rare-disorder/

    Original newspaper article:
    http://eurordiscloud.s3.amazonaws.com/newtim.jpg

    http://eurordiscloud.s3.amazonaws.com/newkatie.jpg

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    10th Moebius Syndrome Conference in Philadelphia
    topic, published 26 days ago

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    Registration is now open for the July 13-15 conference
    http://www.regonline.com/builder/site/Default.aspx?EventID=943924

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    A Smile from the Heart
    news, published 29 days ago

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    Ryan's mother has found herself getting involved with other moms around the country who have children with Moebius. She, like any parent, hopes this baby's childhood years will be spared the cruel comments that come with being different.

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    Learning about a paralyzing, rare disorder
    topic, published about 1 month ago

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    http://www2.starexponent.com/news/2012/jan/23/learning-about-paralyzing-rare-disorder-ar-1631988/

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    Parents of child with rare disorder (Moebius) work to increase awareness
    topic, published about 1 month ago

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    http://www.shelbystar.com/articles/parents-61430-disorder-people.html

    Provided by Tim Smith

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    Eye Surgery
    topic, published about 1 month ago

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    Our son's eye doctor told us his vision is fine, but that the muscles in his eyes may need surgery. She has no experience with Moebius syndrome but is checking with colleagues about this. Does anyone have any information on this surgery?

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    Social Interaction Experiences of Adults with Moebius Syndrome: a Focus Group
    news, published about 1 month ago

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    Abstract only

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    International Rare Disease Day next February 29th
    topic, published about 1 month ago

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    Dear members of the Moebius syndrom community,

    Next February 29, is the 5th International Rare Disease Day. Together with other associations in Alsace, my home region, we will have a stall on Rare Diseases in a Strasbourg Hospital.
    What do you have planned for next February 29th?
    Best Wishes,
    La...