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
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Dobrow syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Dobrow syndrome at this time.
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Specialists
View all specialists →No specialists are currently listed for Dobrow syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Dobrow syndrome.
Community
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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.