Overview
Kumar-Levick syndrome is an extremely rare genetic condition that was first described in the medical literature by Kumar and Levick. This syndrome is characterized by a combination of features that can include craniofacial abnormalities (differences in the shape of the skull and face), skeletal abnormalities, and other developmental differences. Because so few cases have been reported in the medical literature, our understanding of this condition remains limited. The syndrome may present with features such as unusual facial appearance, growth problems, and skeletal changes. Some individuals may also experience developmental delays or intellectual disability, though the range of symptoms can vary between affected individuals. Because this condition is so rare, there is no specific targeted treatment available. Management is typically supportive and symptom-based, meaning doctors focus on treating each individual symptom or complication as it arises. A team of specialists usually works together to provide the best possible care for affected individuals. Genetic counseling is recommended for families to understand the condition and its implications for future pregnancies.
Key symptoms:
Unusual facial featuresSkeletal abnormalitiesGrowth delaysDevelopmental delaysDifferences in skull shapePossible intellectual disability
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Kumar-Levick syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Kumar-Levick syndrome at this time.
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Specialists
View all specialists →No specialists are currently listed for Kumar-Levick 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 Kumar-Levick 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 this syndrome does my child have, and how severe are they?,What specialists should we see, and how often?,Are there any genetic tests that could help confirm the diagnosis or identify the cause?,What therapies or interventions would benefit my child right now?,How should we monitor for potential complications over time?,Is genetic counseling recommended for our family regarding future pregnancies?,Are there any research studies or clinical trials we could participate in?
Common questions about Kumar-Levick syndrome
What is Kumar-Levick syndrome?
Kumar-Levick syndrome is an extremely rare genetic condition that was first described in the medical literature by Kumar and Levick. This syndrome is characterized by a combination of features that can include craniofacial abnormalities (differences in the shape of the skull and face), skeletal abnormalities, and other developmental differences. Because so few cases have been reported in the medical literature, our understanding of this condition remains limited. The syndrome may present with features such as unusual facial appearance, growth problems, and skeletal changes. Some individuals m
At what age does Kumar-Levick syndrome typically begin?
Typical onset of Kumar-Levick syndrome is neonatal. Age of onset can vary across affected individuals.