Kumar-Levick syndrome

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ORPHA:2355OMIM:106990
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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.

Also known as:

Key symptoms:

Unusual facial featuresSkeletal abnormalitiesGrowth delaysDevelopmental delaysDifferences in skull shapePossible intellectual disability

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Kumar-Levick syndrome.

View clinical trials →

No actively recruiting trials found for Kumar-Levick syndrome at this time.

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

Search ClinicalTrials.gov ↗Join the Kumar-Levick syndrome community →

No specialists are currently listed for Kumar-Levick 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 Kumar-Levick syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Kumar-Levick 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 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.