Overview
Urban-Rogers-Meyer syndrome, also known as Urban syndrome or digitorenocerebral syndrome, is an extremely rare genetic condition that affects multiple body systems. It was first described in medical literature in the 1970s and involves a combination of birth defects affecting the fingers and toes, kidneys, and brain. People with this syndrome typically show abnormalities of the fingers and toes (such as short fingers or unusual bone development), kidney malformations, and intellectual disability or developmental delays. Some individuals may also have distinctive facial features and other skeletal abnormalities. The severity of symptoms can vary from person to person, but the combination of limb, kidney, and brain involvement is the hallmark of this condition. Because this syndrome is so rare, there is no specific cure or targeted treatment available. Management focuses on addressing each symptom individually. This may include special education support for developmental delays, monitoring kidney function, and orthopedic care for bone and limb abnormalities. A team of specialists working together provides the best approach to care. Early intervention services for developmental concerns can help children reach their full potential.
Also known as:
Key symptoms:
Short fingers and toesAbnormal bone development in the hands and feetKidney malformationsIntellectual disabilityDevelopmental delaysUnusual facial featuresSmall head sizeSkeletal abnormalitiesLow muscle toneGrowth delays
Clinical phenotype terms (28)— hover any for plain English
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Urban-Rogers-Meyer syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Urban-Rogers-Meyer syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Urban-Rogers-Meyer 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 Urban-Rogers-Meyer syndrome.
Community
No community posts yet. Be the first to share your experience with Urban-Rogers-Meyer syndrome.
Start the conversation →Latest news about Urban-Rogers-Meyer syndrome
No recent news articles for Urban-Rogers-Meyer syndrome.
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.How severe is my child's kidney involvement, and what monitoring schedule do we need?,What developmental therapies should we start, and how soon?,Are there any genetic tests that could help confirm the diagnosis or identify the specific cause?,What signs of kidney problems should I watch for at home?,Will my child need surgery for any of the bone or limb abnormalities?,What is the chance of having another child with this condition?,Are there any specialists or centers with experience in this syndrome that you would recommend?
Common questions about Urban-Rogers-Meyer syndrome
What is Urban-Rogers-Meyer syndrome?
Urban-Rogers-Meyer syndrome, also known as Urban syndrome or digitorenocerebral syndrome, is an extremely rare genetic condition that affects multiple body systems. It was first described in medical literature in the 1970s and involves a combination of birth defects affecting the fingers and toes, kidneys, and brain. People with this syndrome typically show abnormalities of the fingers and toes (such as short fingers or unusual bone development), kidney malformations, and intellectual disability or developmental delays. Some individuals may also have distinctive facial features and other skel
How is Urban-Rogers-Meyer syndrome inherited?
Urban-Rogers-Meyer syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Urban-Rogers-Meyer syndrome typically begin?
Typical onset of Urban-Rogers-Meyer syndrome is neonatal. Age of onset can vary across affected individuals.