OBSOLETE: Craniofaciocervical osteoglyphic dysplasia

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:1800
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Craniofaciocervical osteoglyphic dysplasia is an extremely rare skeletal disorder that has been described in the medical literature under this name, though it is now considered an obsolete or outdated classification. The term 'osteoglyphic' refers to a pattern of unusual grooves or furrows seen in bones on X-ray imaging. This condition primarily affects the bones of the skull (cranio-), face (facio-), and neck (cervical) region, leading to abnormal bone development and structure in these areas. Patients may show unusual facial features, abnormalities in the shape of the skull, and changes in the cervical spine. Because this diagnosis is obsolete, it is possible that cases originally described under this name have since been reclassified under a different or more precisely defined skeletal dysplasia as genetic and clinical understanding has advanced. Very few cases have been reported in the medical literature, making it difficult to fully characterize the natural history, inheritance, and optimal management. Patients who were previously given this diagnosis should work closely with a clinical geneticist and skeletal dysplasia specialist to determine whether a more current and specific diagnosis applies to their condition. Treatment has generally been supportive and symptom-based, focusing on managing skeletal complications and monitoring for any progression of bone abnormalities.

Also known as:

Key symptoms:

Unusual shape of the skullAbnormal facial featuresNeck or cervical spine abnormalitiesGrooved or furrowed appearance of bones on X-rayThickening or hardening of certain bonesShort stature or growth delaysLimited neck movementDental abnormalities

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Craniofaciocervical osteoglyphic dysplasia.

View clinical trials →

No actively recruiting trials found for OBSOLETE: Craniofaciocervical osteoglyphic dysplasia at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the OBSOLETE: Craniofaciocervical osteoglyphic dysplasia community →

No specialists are currently listed for OBSOLETE: Craniofaciocervical osteoglyphic dysplasia.

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 OBSOLETE: Craniofaciocervical osteoglyphic dysplasia.

Search all travel grants →NORD Financial Assistance ↗

Community

Open OBSOLETE: Craniofaciocervical osteoglyphic dysplasiaForum →

No community posts yet. Be the first to share your experience with OBSOLETE: Craniofaciocervical osteoglyphic dysplasia.

Start the conversation →

Latest news about OBSOLETE: Craniofaciocervical osteoglyphic dysplasia

No recent news articles for OBSOLETE: Craniofaciocervical osteoglyphic dysplasia.

Follow this condition to be notified when news becomes available.

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

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

Questions for your doctor

Bring these to your next appointment

  • Q1.Is this diagnosis still considered accurate, or should we pursue modern genetic testing to get a more specific diagnosis?,What imaging studies should be done regularly to monitor for changes in the skull, face, and neck bones?,Are there any signs of spinal cord compression that I should watch for at home?,Would whole exome or whole genome sequencing help identify the underlying cause?,Are there any restrictions on physical activities due to cervical spine involvement?,Should other family members be evaluated or tested?,Can you refer us to a center that specializes in skeletal dysplasias for a second opinion?

Common questions about OBSOLETE: Craniofaciocervical osteoglyphic dysplasia

What is OBSOLETE: Craniofaciocervical osteoglyphic dysplasia?

Craniofaciocervical osteoglyphic dysplasia is an extremely rare skeletal disorder that has been described in the medical literature under this name, though it is now considered an obsolete or outdated classification. The term 'osteoglyphic' refers to a pattern of unusual grooves or furrows seen in bones on X-ray imaging. This condition primarily affects the bones of the skull (cranio-), face (facio-), and neck (cervical) region, leading to abnormal bone development and structure in these areas. Patients may show unusual facial features, abnormalities in the shape of the skull, and changes in t

At what age does OBSOLETE: Craniofaciocervical osteoglyphic dysplasia typically begin?

Typical onset of OBSOLETE: Craniofaciocervical osteoglyphic dysplasia is childhood. Age of onset can vary across affected individuals.