Overview
Ulnar hemimelia, bilateral, is a rare congenital limb condition in which the ulna bone — one of the two long bones in the forearm — is partially or completely absent in both arms. This condition is present at birth and results from abnormal limb development during pregnancy. Because the ulna plays an important role in forearm structure, wrist stability, and elbow function, its absence can lead to shortened forearms, limited range of motion at the elbow and wrist, bowing of the remaining forearm bone (the radius), and abnormalities of the hand and fingers on both sides. The severity can vary widely; some individuals may have only a small portion of the ulna missing, while others may lack the bone entirely. Associated hand abnormalities may include missing or fused fingers. This condition may occur in isolation or as part of a broader syndrome. Treatment is primarily supportive and may include orthopedic surgery, prosthetics, and occupational therapy to improve function and independence. Note: This Orphanet entry is marked as 'OBSOLETE,' meaning it may have been reclassified or merged into a broader diagnostic category. Patients and families should consult with a clinical geneticist or orthopedic specialist for the most current classification and management guidance.
Also known as:
Key symptoms:
Shortened forearms on both sidesMissing or underdeveloped ulna bone in both armsLimited elbow movementLimited wrist movementBowing of the forearmMissing or fused fingersUnstable wrist jointsAbnormal hand shapeDifficulty gripping or holding objectsUnequal arm length compared to the body
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Ulnar hemimelia, bilateral.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Ulnar hemimelia, bilateral.
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 OBSOLETE: Ulnar hemimelia, bilateral.
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.How severe is the ulna deficiency in each arm, and what does that mean for my child's function?,Is this condition isolated, or could it be part of a genetic syndrome?,What surgical options are available, and when is the best time for surgery?,Would my child benefit from prosthetic devices or assistive technology?,What kind of therapy will help my child develop the best possible hand and arm function?,Are there genetic tests we should consider for family planning purposes?,Can you connect us with other families or support groups for children with limb differences?
Common questions about OBSOLETE: Ulnar hemimelia, bilateral
What is OBSOLETE: Ulnar hemimelia, bilateral?
Ulnar hemimelia, bilateral, is a rare congenital limb condition in which the ulna bone — one of the two long bones in the forearm — is partially or completely absent in both arms. This condition is present at birth and results from abnormal limb development during pregnancy. Because the ulna plays an important role in forearm structure, wrist stability, and elbow function, its absence can lead to shortened forearms, limited range of motion at the elbow and wrist, bowing of the remaining forearm bone (the radius), and abnormalities of the hand and fingers on both sides. The severity can vary wi
At what age does OBSOLETE: Ulnar hemimelia, bilateral typically begin?
Typical onset of OBSOLETE: Ulnar hemimelia, bilateral is neonatal. Age of onset can vary across affected individuals.