Larsen-like syndrome, B3GAT3 type

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ORPHA:284139OMIM:245600Q74.8
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Overview

Larsen-like syndrome, B3GAT3 type, is a very rare genetic condition that affects the development of bones, joints, and connective tissues throughout the body. It is sometimes called B3GAT3-related disorder or linkeropathy because the B3GAT3 gene plays a key role in building important sugar chains (called glycosaminoglycans) that help form cartilage, bone, and other connective tissues. When this gene does not work properly, the body cannot build these structures correctly. People with this condition are often born with multiple joint dislocations, especially of the hips, knees, and elbows, which is why it resembles classic Larsen syndrome. Other common features include a flat facial appearance, short stature, loose and overly flexible joints, heart defects, and skeletal abnormalities such as curved spine or unusual bone shapes. Some individuals may also have intellectual disability or developmental delays. There is currently no cure for this condition. Treatment focuses on managing symptoms and may include surgeries to correct joint dislocations or heart defects, physical therapy to strengthen muscles and improve mobility, and regular monitoring by a team of specialists. Early diagnosis and coordinated care can help improve quality of life.

Also known as:

Key symptoms:

Multiple joint dislocations present at birthLoose and overly flexible jointsFlat facial appearanceShort statureCurved spine (scoliosis or kyphosis)Heart defects present at birthShort fingers or toesClubfootSoft and stretchy skinDevelopmental delaysIntellectual disability in some casesHearing lossFragile bones or frequent fracturesWide-set eyesBlue tint to the whites of the eyes

Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

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 Larsen-like syndrome, B3GAT3 type.

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No actively recruiting trials found for Larsen-like syndrome, B3GAT3 type at this time.

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No specialists are currently listed for Larsen-like syndrome, B3GAT3 type.

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 Larsen-like syndrome, B3GAT3 type.

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Community

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Caregiver Resources

NORD Caregiver Resources

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Mental Health Support

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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 condition, and which organs or systems are affected?,Does my child have any heart defects that need treatment?,What surgeries or procedures might be needed, and when?,How often should we schedule follow-up visits with each specialist?,What physical therapy or rehabilitation programs would benefit my child?,Are there any activities or movements we should avoid to prevent joint injuries?,Since this is a recessive condition, what is the chance of having another affected child, and is prenatal testing available?

Common questions about Larsen-like syndrome, B3GAT3 type

What is Larsen-like syndrome, B3GAT3 type?

Larsen-like syndrome, B3GAT3 type, is a very rare genetic condition that affects the development of bones, joints, and connective tissues throughout the body. It is sometimes called B3GAT3-related disorder or linkeropathy because the B3GAT3 gene plays a key role in building important sugar chains (called glycosaminoglycans) that help form cartilage, bone, and other connective tissues. When this gene does not work properly, the body cannot build these structures correctly. People with this condition are often born with multiple joint dislocations, especially of the hips, knees, and elbows, whi

How is Larsen-like syndrome, B3GAT3 type inherited?

Larsen-like syndrome, B3GAT3 type follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Larsen-like syndrome, B3GAT3 type typically begin?

Typical onset of Larsen-like syndrome, B3GAT3 type is neonatal. Age of onset can vary across affected individuals.