Dobrow syndrome

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ORPHA:3262Q87.8
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8Treatment centers

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Overview

Dobrow syndrome, also known as Dobrow syndrome or sometimes referenced under the broader category of multiple congenital anomaly syndromes, is an extremely rare genetic condition that affects multiple body systems. It is classified under Orphanet code 3262 and ICD-10 code Q87.8, which covers other specified congenital malformation syndromes not classified elsewhere. This condition is characterized by a combination of facial abnormalities, skeletal problems, and other developmental differences that are present from birth. Affected individuals may have distinctive facial features, limb abnormalities, and growth delays. Because the syndrome is so rare, detailed clinical descriptions are limited to very few case reports in the medical literature. Due to the extreme rarity of Dobrow syndrome, there is no specific targeted treatment available. Management is supportive and focuses on addressing individual symptoms as they arise. This may include surgical correction of certain physical abnormalities, physical therapy for skeletal issues, and regular monitoring by a team of specialists. Early intervention and coordinated care can help improve quality of life for affected individuals and their families.

Also known as:

Key symptoms:

Unusual facial featuresSkeletal abnormalitiesGrowth delaysLimb differencesDevelopmental delaysShort stature

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

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

View clinical trials →

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

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

Search ClinicalTrials.gov ↗Join the Dobrow syndrome community →

No specialists are currently listed for Dobrow 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 Dobrow syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Dobrow syndrome

No recent news articles for Dobrow syndrome.

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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.What specific features of my child's condition are consistent with Dobrow syndrome?,Should we pursue genetic testing such as whole exome sequencing to look for a cause?,What specialists should be part of our care team?,Are there any surgeries or interventions recommended for my child's specific symptoms?,What developmental milestones should we be watching for?,Are there any clinical studies or registries we should consider joining?,How often should follow-up appointments be scheduled?

Common questions about Dobrow syndrome

What is Dobrow syndrome?

Dobrow syndrome, also known as Dobrow syndrome or sometimes referenced under the broader category of multiple congenital anomaly syndromes, is an extremely rare genetic condition that affects multiple body systems. It is classified under Orphanet code 3262 and ICD-10 code Q87.8, which covers other specified congenital malformation syndromes not classified elsewhere. This condition is characterized by a combination of facial abnormalities, skeletal problems, and other developmental differences that are present from birth. Affected individuals may have distinctive facial features, limb abnormal

At what age does Dobrow syndrome typically begin?

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