OBSOLETE: Congenital absence of both forearm and hand, unilateral

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ORPHA:295093
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Overview

Congenital absence of both the forearm and hand on one side of the body is a rare limb difference that is present at birth. In this condition, a baby is born missing the lower part of one arm — from below the elbow down — including the wrist and hand. This is sometimes called a transverse limb deficiency or terminal transverse deficiency of the forearm. The term 'OBSOLETE' in the official name means this specific classification code is no longer actively used in current medical databases, and the condition may now be categorized under broader limb reduction defect codes. This condition affects how a child uses their arm for everyday tasks such as grasping, holding objects, and performing two-handed activities. However, many children adapt remarkably well. The cause can vary — it may result from disruptions in blood flow during fetal development (vascular disruption), amniotic band syndrome, or in some cases genetic factors, though most cases occur sporadically without a clear inherited cause. Treatment focuses on maximizing function and independence. Options include prosthetic devices (artificial limbs), occupational therapy, and adaptive equipment. Early intervention with a multidisciplinary team helps children develop skills and confidence. There is no cure that can regrow the missing limb, but advances in prosthetic technology — including myoelectric (muscle-controlled) prostheses and 3D-printed devices — continue to improve quality of life for affected individuals.

Also known as:

Key symptoms:

Missing forearm and hand on one side from birthShortened arm ending below the elbowDifficulty grasping or holding objects with the affected sideChallenges with two-handed tasksPossible difference in arm length between the two sidesResidual limb may have a rounded or tapered endPossible reduced muscle development on the affected side

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Congenital absence of both forearm and hand, unilateral.

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No actively recruiting trials found for OBSOLETE: Congenital absence of both forearm and hand, unilateral at this time.

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No specialists are currently listed for OBSOLETE: Congenital absence of both forearm and hand, unilateral.

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 OBSOLETE: Congenital absence of both forearm and hand, unilateral.

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Community

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Latest news about OBSOLETE: Congenital absence of both forearm and hand, unilateral

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

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.Are there any other associated conditions or syndromes we should test for?,When should my child be fitted for their first prosthesis?,What type of prosthesis would be best for my child's age and activity level?,How often will my child need occupational therapy, and what goals should we set?,Are there any clinical trials or new technologies we should know about?,Can you refer us to a support group or organization for families of children with limb differences?,What school accommodations should we request for my child?

Common questions about OBSOLETE: Congenital absence of both forearm and hand, unilateral

What is OBSOLETE: Congenital absence of both forearm and hand, unilateral?

Congenital absence of both the forearm and hand on one side of the body is a rare limb difference that is present at birth. In this condition, a baby is born missing the lower part of one arm — from below the elbow down — including the wrist and hand. This is sometimes called a transverse limb deficiency or terminal transverse deficiency of the forearm. The term 'OBSOLETE' in the official name means this specific classification code is no longer actively used in current medical databases, and the condition may now be categorized under broader limb reduction defect codes. This condition affect

How is OBSOLETE: Congenital absence of both forearm and hand, unilateral inherited?

OBSOLETE: Congenital absence of both forearm and hand, unilateral follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does OBSOLETE: Congenital absence of both forearm and hand, unilateral typically begin?

Typical onset of OBSOLETE: Congenital absence of both forearm and hand, unilateral is neonatal. Age of onset can vary across affected individuals.