Lower limb malformation-hypospadias syndrome

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Overview

Lower limb malformation-hypospadias syndrome is a very rare condition present from birth that affects the development of the lower limbs and the urinary opening in males. The name describes the two main features: abnormal formation of the legs or feet, and hypospadias, which means the opening of the urethra (the tube that carries urine out of the body) is located on the underside of the penis rather than at the tip. The lower limb differences can include missing or fused toes, shortened or abnormally shaped bones in the feet or legs, or other structural changes. This combination of features is sometimes called 'lower limb defects with hypospadias.' Because this syndrome is so rare, the full range of symptoms and how they vary from person to person is not completely understood. Most cases are identified at birth during a physical examination. Treatment focuses on correcting the specific physical differences through surgery and supportive care. A team of specialists is usually needed to manage both the urological and orthopedic aspects of the condition. Early diagnosis and coordinated care can greatly improve quality of life for affected individuals.

Also known as:

Key symptoms:

Urethra opening on the underside of the penis instead of the tip (hypospadias)Abnormal shape or structure of the feet or toesMissing or fused toesShortened or underdeveloped bones in the lower legs or feetDifficulty with normal urination due to the misplaced urethral openingPossible curvature of the penis (chordee)Differences in the appearance or function of one or both lower limbs

Clinical phenotype terms (12)— hover any for plain English
Abnormality of the spleenHP:0001743
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Lower limb malformation-hypospadias syndrome.

View clinical trials →

No actively recruiting trials found for Lower limb malformation-hypospadias syndrome at this time.

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No specialists are currently listed for Lower limb malformation-hypospadias 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 Lower limb malformation-hypospadias syndrome.

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Community

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Caregiver Resources

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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 is the best timing and approach for hypospadias surgery for my child?,Will my child need more than one surgery, and what are the risks?,Should we do genetic testing, and what might it tell us about the cause?,What are the chances that future children could be affected?,What type of physical therapy or orthopedic treatment is recommended for the lower limb differences?,Are there any kidney or urinary tract problems we should check for?,Are there any patient registries or research studies we could participate in?

Common questions about Lower limb malformation-hypospadias syndrome

What is Lower limb malformation-hypospadias syndrome?

Lower limb malformation-hypospadias syndrome is a very rare condition present from birth that affects the development of the lower limbs and the urinary opening in males. The name describes the two main features: abnormal formation of the legs or feet, and hypospadias, which means the opening of the urethra (the tube that carries urine out of the body) is located on the underside of the penis rather than at the tip. The lower limb differences can include missing or fused toes, shortened or abnormally shaped bones in the feet or legs, or other structural changes. This combination of features is

At what age does Lower limb malformation-hypospadias syndrome typically begin?

Typical onset of Lower limb malformation-hypospadias syndrome is neonatal. Age of onset can vary across affected individuals.