Overview
Congenital pseudoarthrosis of the radius is an extremely rare bone condition that is present at birth. In this condition, the radius — one of the two long bones in the forearm — fails to form a proper bony connection, creating a "false joint" (pseudoarthrosis) where solid bone should exist. This means the bone is either not fully formed or has a gap that does not heal on its own, leading to instability, deformity, and reduced function of the affected forearm and wrist. Children with this condition typically show bowing or angulation of the forearm, limited movement at the wrist or elbow, and weakness in gripping or carrying objects. The affected arm may appear shorter or visibly different from the other side. Pain may or may not be present, but functional limitations are common. Congenital pseudoarthrosis of the radius is much rarer than the more well-known congenital pseudoarthrosis of the tibia (shinbone). In some cases, it may be associated with neurofibromatosis type 1 (NF1), a genetic condition that affects how bones and other tissues develop. Treatment is primarily surgical and aims to achieve bony union (healing of the gap), restore alignment, and improve function. Multiple surgeries may be needed, and outcomes can vary. Bone grafting, internal fixation with plates or rods, and sometimes the use of external fixation devices (like the Ilizarov frame) are among the approaches used. Supportive care includes physical therapy and occupational therapy to maximize arm function.
Also known as:
Key symptoms:
Bowing or angulation of the forearmForearm that appears shorter on the affected sideWeakness in the hand or wristDifficulty gripping or holding objectsLimited range of motion at the wrist or elbowVisible deformity of the forearmA gap or unstable area in the forearm bonePain in the forearm (in some cases)Reduced ability to rotate the forearm (turning palm up or down)Recurrent fractures at the site of the pseudoarthrosis
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 Congenital pseudoarthrosis of the radius.
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Specialists
View all specialists →No specialists are currently listed for Congenital pseudoarthrosis of the radius.
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 Congenital pseudoarthrosis of the radius.
Community
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Caregiver Resources
NORD Caregiver Resources
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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.Is my child's condition associated with neurofibromatosis type 1, and should we do genetic testing?,What surgical approach do you recommend, and how many similar cases have you treated?,What is the likelihood that the bone will heal after surgery, and what happens if it doesn't?,How many surgeries might my child need over the course of childhood?,What physical therapy or occupational therapy will be needed after surgery?,Are there any activities my child should avoid to protect the arm?,What are the long-term expectations for arm function and appearance?
Common questions about Congenital pseudoarthrosis of the radius
What is Congenital pseudoarthrosis of the radius?
Congenital pseudoarthrosis of the radius is an extremely rare bone condition that is present at birth. In this condition, the radius — one of the two long bones in the forearm — fails to form a proper bony connection, creating a "false joint" (pseudoarthrosis) where solid bone should exist. This means the bone is either not fully formed or has a gap that does not heal on its own, leading to instability, deformity, and reduced function of the affected forearm and wrist. Children with this condition typically show bowing or angulation of the forearm, limited movement at the wrist or elbow, and
At what age does Congenital pseudoarthrosis of the radius typically begin?
Typical onset of Congenital pseudoarthrosis of the radius is neonatal. Age of onset can vary across affected individuals.