Moebius syndrome community

Here's a selection of information from patients & professionals to better understand Moebius syndrome .

Moebius syndrome resources

Moebius syndrome Frequently Asked Questions

Here are some of the most frequently asked questions and their answers:

If you are a patient or carer with a question about living with Moebius syndrome, about treatments, or other relevant information please email your question to FAQ@rarediseasecommunities.org and we will put it to the specialists who have agreed to answer your questions from time to time.

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How is Moebius syndrome treated?

Infants often require special bottles or feeding tubes due to the inability to suck. Strabismus (crossed eyes) at times can be corrected with surgery. Physical and occupational therapies help impro...

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What causes Moebius syndrome?

Moebius syndrome is congenital (present at birth). Its precise cause remains unknown. It affects males and females equally. No prenatal test for Moebius syndrome is currently available. Research is...

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What are the symptoms of Moebius syndrome?

The most apparent symptoms are related to facial expression. In newborn infants, the first sign is often an impaired ability to suck and the inability to blink may cause dryness and irritation of t...

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What is Moebius syndrome?

People with Moebius syndrome have no facial expression — they can't smile, frown, grimace, blink or move their eyes laterally. Moebius syndrome is a rare congenital neurological condition defi...

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Moebius syndrome Patient Groups

These are patient organisations that have experience and expertise in Moebius syndrome . They are supporters of this website. Contact them for more information on their activities.

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  • Moebius Syndrome Foundation

    The Moebius Syndrome Foundation provides information and support to individuals with Moebius syndrome and their families, promotes greater awareness and understanding of Moebius syndrome, and advocates for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. The Moebius Syndrome Foundation publishes a quarterly newsletter, offers support for families and adults, and holds conferences in different parts of the U.S. every two years. The Moebius Syndrome Foundation also funds research efforts into the cause and treatment of Moebius syndrome.

    Contact Moebius Syndrome Foundation

  • Many Faces of Moebius Syndrome

    The mission of The Many Faces of Moebius Syndrome is to create a better tomorrow for ourselves and our children through education and public awareness.

    Contact Many Faces of Moebius Syndrome

  • Assoc. Syndrome Moebius France

    Depuis sa création, notre Association a les objectifs suivants : Aider au diagnostic précoce du syndrome de Moebius. Recenser les familles confrontées au syndrome en France et en Belgique, afin de créer des liens entre elles. Informer et sensibiliser le grand public au travers des médias pour faciliter l’intégration dans la société (Ecole, Travail) des personnes touchées par le syndrome Fédérer nos efforts avec ceux d’autres associations européennes du syndrome pour mettre en commun nos moyens et faire avancer la recherche.

    Contact Assoc. Syndrome Moebius France

  • Moebius Syndrome Australia

    Kids with Facial Paralysis - Moebius Syndrome is an Australian Support Group for adults and children with congenital facial paralysis, acquired facial paralysis and Moebius syndrome to come together for not only support but the chance to meet other members who may live in the same area. Please feel free to research up to date and accurate information through the many links within the group when you join up. Site Manager: Karin Thompson 27 Wirilda Street Leeton. N.S.W 2705 AUSTRALIA Kids with Facial Paralysis~Moebius Syndrome

    Contact Moebius Syndrome Australia

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Moebius syndrome Documents

Resources, documents and detailed informations on Moebius syndrome . In this section you can download brochures, ask for printed documents or find useful links.

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Moebius syndrome Articles

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Trouver un médecin en France (FR)

Syndrome de Moebius
Réseau Hôpital Armand Trousseau
8-28 avenue du Docteur Arnold Netter
75571 Paris Cedex 12

Au sein de l'Hôpital Trousseau :




Ci...

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Orphanet: Moebius syndrome (2006)

Moebius syndrome is a congenital form of oculofacial paralysis. Approximately 300 cases have been reported in the literature to date. The first manifestation of the disease is an impaired ability t...

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NORD Rare Disease Database: Moebius syndrome (EN)

Moebius syndrome is a rare developmental disorder present at birth (congenital) that is characterized by facial paralysis. Affected individuals are not able to smile or frown because two important ...

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Moebius syndrome Events

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  • July 2012

  • 10TH MOEBIUS SYNDROME CONFERENCE

    From 13 to 15 July 2012

    Plan now to attend the 10th Moebius Syndrome Conference, organized by the Moebius Syndrome Foundation, USA. Online and paper registration will be available in February 2012. We are able to keep early and standard registration fees the same as they were for the 2010 conference in Colorado. You can reserve your room now at the reduced hotel conference rate of $119 ($137.09 including Philadelphia hotel tax). The reduced conference rate, including half-price parking, is available from July 10 through July 18, 2012. More information is available on the Conference website: http://www.regonline.com/10thmoebiussyndromeconference

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  • January 2013

  • Moebius Syndrome Awareness Day

    On 24 January 2013

    The date of January 24th is significant to Moebius Syndrome because that is the date in which Paul Julius Möbius, the neurologist who discovered the disorder was born in 1853.

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Moebius syndrome community news

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