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. 

Zayden by Jenn and Matt published about 1 month ago


Let me start off Zayden's story by saying that he was a complete surprise!
From the time I could feel Zayden moving, he never stopped. By my third trimester, I was getting motion sickness from how much this little guy was moving around and kicking in there! His daddy and I would joke about how we were going to have Penn State's greatest field goal kicker on our hands. During my pr...

Moebius Syndrome Awareness Day by Many Faces of Moebius Syndrome published 3 months ago


Looking Ahead & Looking Back
Provided by the Many Faces of Moebius Syndrome.

Y tu ¿Sabes Moebius? by Allie published 3 months ago


 


Subtitles available in English

Video: Moebius Syndrome France by Syndrome Moebius France published about 1 year ago


This video clip is an excerpt from the French Moebius Group’s DVD for schools.
Children with Moebius Syndrome can often have a tough time at school. Gaining acceptance from classmates i...

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 2 days 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 17 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 23 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 27 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 about 1 month 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...