Activité récente dans la communauté Syndrome de Moebius

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  2012 Moebius Syndrome Foundation Spring Newsletter
  document, publié il y a environ 1 mois

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  The Moebius Syndrome News is published three times a year.

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  Moebius Syndrome Aware Day III January 24th 2013
  topic, publié il y a environ 1 mois

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  Planning for Moebius Syndrome Awareness Day 2013 is under way. Join us on facebook to learn more! https://www.facebook.com/events/268350593242302/?notif_t=plan_user_joined

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  Calendars
  topic, publié il y a 2 mois

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  We have some 2012 Moebius Syndrome Calendars that we are giving away for free. If you would like one send us an email with your name and address in it to manyfacesofmoebiussyndrome@yahoo.com 1 Calendar per person.

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  Six-year-old Nottingham girl Mia Blackwell cannot smile
  news, publié il y a 2 mois

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  Mia Blackwell, from Bilborough in Nottingham, is one of 124 people in the UK with the rare Moebius Syndrome, which causes facial paralysis.

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  Special surgery brings a smile to girl’s face
  news, publié il y a 2 mois

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  Kasey Wessel of Otsego is one very determined 5-year-old. She has the extremely rare Möebius syndrome, which paralyzes a person’s face, not allowing them to smile, frown or blink. Yet her courage and determination paid off last year when she smiled for the first time after undergoin...

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  Conference Fundrasing
  topic, publié il y a 2 mois

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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, publié il y a 3 mois

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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, publié il y a 3 mois

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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, publié il y a 3 mois

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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, publié il y a 3 mois

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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.