Overview
Radial hemimelia, bilateral, refers to a condition where the radius bone (one of the two bones in the forearm) is partially or completely absent on both sides of the body. The term 'hemimelia' means that part of a limb is missing or underdeveloped. When it is 'bilateral,' it means both arms are affected. This condition is present at birth and can range from a slightly shorter radius to a completely missing radius bone. Children born with this condition typically have shortened forearms, and the wrists and hands may curve inward toward the thumb side. The thumb may also be underdeveloped or absent. It is important to note that this specific Orphanet entry is marked as 'OBSOLETE,' meaning it has been retired or merged into a broader or updated classification. Bilateral radial hemimelia is now more commonly discussed under the umbrella of 'radial ray deficiency' or 'radial longitudinal deficiency.' This condition can occur as an isolated finding or as part of broader genetic syndromes such as Holt-Oram syndrome, Fanconi anemia, thrombocytopenia-absent radius (TAR) syndrome, or VACTERL association. Treatment typically involves a combination of splinting, physical therapy, and surgical interventions to improve hand and arm function. Early evaluation by a team of specialists is essential to determine the underlying cause and plan appropriate care.
Also known as:
Key symptoms:
Shortened forearms on both sidesAbsent or underdeveloped radius bone in both armsWrists that curve inward toward the thumb sideAbsent or small thumbsReduced grip strengthLimited wrist and forearm movementBowing of the remaining forearm bone (ulna)Difficulty with fine motor tasks like grasping objectsStiff or limited elbow movementUnequal arm lengths 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)
FDA & Trial Timeline
1 eventKing's College London
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Radial hemimelia, bilateral.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Radial 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: Radial hemimelia, bilateral.
Community
No community posts yet. Be the first to share your experience with OBSOLETE: Radial hemimelia, bilateral.
Start the conversation →Latest news about OBSOLETE: Radial hemimelia, bilateral
No recent news articles for OBSOLETE: Radial hemimelia, bilateral.
Follow this condition to be notified when news becomes available.
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.Is my child's radial hemimelia part of a broader genetic syndrome, and what testing is needed?,What surgical options are available, and when is the best time to operate?,How can occupational therapy help improve my child's hand function?,Are there any associated health problems we should screen for, such as heart or blood disorders?,What adaptive tools or devices can help my child with daily activities?,Should other family members be tested for genetic conditions?,What is the long-term outlook for my child's arm function and independence?
Common questions about OBSOLETE: Radial hemimelia, bilateral
What is OBSOLETE: Radial hemimelia, bilateral?
Radial hemimelia, bilateral, refers to a condition where the radius bone (one of the two bones in the forearm) is partially or completely absent on both sides of the body. The term 'hemimelia' means that part of a limb is missing or underdeveloped. When it is 'bilateral,' it means both arms are affected. This condition is present at birth and can range from a slightly shorter radius to a completely missing radius bone. Children born with this condition typically have shortened forearms, and the wrists and hands may curve inward toward the thumb side. The thumb may also be underdeveloped or abs
At what age does OBSOLETE: Radial hemimelia, bilateral typically begin?
Typical onset of OBSOLETE: Radial hemimelia, bilateral is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for OBSOLETE: Radial hemimelia, bilateral?
Yes — 1 recruiting clinical trial is currently listed for OBSOLETE: Radial hemimelia, bilateral on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.