Moebius syndrome

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ORPHA:570OMIM:157900Q87.0
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3Specialists8Treatment centers

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Overview

Moebius syndrome (also spelled Möbius syndrome) is a rare congenital neurological disorder characterized primarily by the absence or underdevelopment of the 6th (abducens) and 7th (facial) cranial nerves, which control lateral eye movement and facial expression, respectively. This results in facial paralysis and an inability to move the eyes from side to side. Affected individuals are born with a mask-like face, unable to smile, frown, or show facial expressions, and often cannot fully close their eyelids. Feeding difficulties are common in infancy due to impaired sucking ability. Other cranial nerves may also be involved, leading to difficulties with swallowing, speech, and hearing. Beyond the cranial nerve involvement, Moebius syndrome can affect multiple body systems. Limb anomalies are present in a significant proportion of patients, including clubfoot (talipes equinovarus) and hand abnormalities such as brachydactyly or syndactyly. Some individuals may have Poland syndrome (absence of the pectoralis major muscle) as an associated finding. Dental abnormalities, skeletal malformations of the chest wall, and occasional intellectual disability or autism spectrum features have also been reported, though most individuals have normal intelligence. There is no cure for Moebius syndrome, and treatment is supportive and multidisciplinary. Early intervention may include specialized feeding techniques and speech therapy. Surgical options include "smile surgery" (gracilis muscle transplant with nerve transfer), which can restore the ability to smile and significantly improve quality of life and social interaction. Strabismus surgery may address eye alignment issues, and physical and occupational therapy can help with limb and motor difficulties. Regular follow-up with neurology, ophthalmology, orthopedics, and other specialists is recommended throughout life.

Also known as:

Clinical phenotype terms— hover any for plain English:

Aplasia of the pectoralis major muscleHP:0009751
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Moebius syndrome.

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No actively recruiting trials found for Moebius syndrome at this time.

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Specialists

3 foundView all specialists →
BB
Barbara B Biesecker
CLARKS SUMMIT, PA
Specialist
PI on 16 active trials
EM
Eirini Manoli, M.D.
BETHESDA, MD
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Moebius syndrome.

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Community

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Latest news about Moebius syndrome

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Caregiver Resources

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Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Moebius syndrome

What is Moebius syndrome?

Moebius syndrome (also spelled Möbius syndrome) is a rare congenital neurological disorder characterized primarily by the absence or underdevelopment of the 6th (abducens) and 7th (facial) cranial nerves, which control lateral eye movement and facial expression, respectively. This results in facial paralysis and an inability to move the eyes from side to side. Affected individuals are born with a mask-like face, unable to smile, frown, or show facial expressions, and often cannot fully close their eyelids. Feeding difficulties are common in infancy due to impaired sucking ability. Other crania

How is Moebius syndrome inherited?

Moebius syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Moebius syndrome typically begin?

Typical onset of Moebius syndrome is neonatal. Age of onset can vary across affected individuals.

Which specialists treat Moebius syndrome?

3 specialists and care centers treating Moebius syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.