Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome

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ORPHA:314555OMIM:611174Q87.5
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Overview

Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome is an extremely rare genetic condition that affects multiple body systems. As the name describes, people with this syndrome have a combination of unusual facial features (facial dysmorphism), eye problems (ocular anomalies), weakened bones (osteopenia), learning and thinking difficulties (intellectual disability), and dental problems (dental anomalies). The facial features may include a broad forehead, widely spaced eyes, a flat nasal bridge, and other distinctive characteristics that become apparent in early childhood. Eye problems can range from structural differences to vision impairment. Osteopenia means the bones are less dense than normal, which can increase the risk of fractures. Intellectual disability can vary in severity but typically affects learning, problem-solving, and daily functioning. Dental anomalies may include abnormally shaped teeth, missing teeth, or delayed tooth eruption. Because this syndrome is so rare, there is very limited published medical literature, and treatment is primarily supportive, focusing on managing each individual symptom. A team of specialists is usually needed to provide comprehensive care. Research into the underlying genetic cause and potential targeted treatments is still in its early stages.

Also known as:

Key symptoms:

Unusual facial featuresEye abnormalities or vision problemsWeak or thin bones (osteopenia)Intellectual disability or learning difficultiesDental abnormalities such as missing or oddly shaped teethDelayed development or developmental milestonesBroad foreheadWidely spaced eyesFlat nasal bridgeShort stature or growth delaysIncreased risk of bone fracturesSpeech and language delays

Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome.

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No actively recruiting trials found for Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome at this time.

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No specialists are currently listed for Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome.

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Community

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Caregiver Resources

NORD Caregiver Resources

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Mental Health Support

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Family & Caregiver Grants

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Social Security Disability

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Questions for your doctor

Bring these to your next appointment

  • Q1.What specific tests should be done to confirm the diagnosis and look for a genetic cause?,How severe is the osteopenia, and what can we do to protect the bones?,What type of eye problems are present, and how should they be treated?,What therapies and early intervention services do you recommend?,How often should we schedule follow-up appointments with each specialist?,Are there any clinical trials or research studies we could participate in?,What should we watch for that would require urgent medical attention?

Common questions about Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome

What is Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome?

Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome is an extremely rare genetic condition that affects multiple body systems. As the name describes, people with this syndrome have a combination of unusual facial features (facial dysmorphism), eye problems (ocular anomalies), weakened bones (osteopenia), learning and thinking difficulties (intellectual disability), and dental problems (dental anomalies). The facial features may include a broad forehead, widely spaced eyes, a flat nasal bridge, and other distinctive characteristics that become appare

How is Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome inherited?

Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome typically begin?

Typical onset of Facial dysmorphism-ocular anomalies-osteopenia-intellectual disability-dental anomalies syndrome is childhood. Age of onset can vary across affected individuals.