Overview
Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy refers to a group of rare congenital conditions in which babies are born with extra fingers or toes (polydactyly), fused fingers or toes (syndactyly), extra bones within the fingers or toes (hyperphalangy), or duplication of parts of the limbs. These conditions are present at birth and are caused by problems during early development when the hands and feet are forming in the womb. The severity can vary widely — some individuals may have only a small extra finger, while others may have more complex limb differences involving multiple hands or feet. These syndromes are typically identified at birth or even before birth through prenatal ultrasound. They can occur as isolated findings or as part of a broader genetic syndrome that may affect other parts of the body. Treatment is primarily surgical, with the goal of improving hand and foot function and appearance. Orthopedic surgeons and hand specialists work with families to plan surgeries, which are often performed in early childhood. Physical and occupational therapy may also be recommended to help children develop fine motor skills. The outlook for most children is generally good, especially when the limb differences are the main concern and there are no other major organ problems. Genetic counseling is important for families to understand the cause and the chance of the condition occurring again in future pregnancies.
Key symptoms:
Extra fingers or toes (polydactyly)Fused or webbed fingers or toes (syndactyly)Extra bones in the fingers or toes (hyperphalangy)Duplication of parts of the hand or footAbnormal shape or size of fingers or toesStiff or limited movement in affected fingers or toesUnusual appearance of hands or feet at birthDifficulty gripping or grasping objectsAsymmetry between the two hands or feetPossible involvement of other limb bones
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 Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy.
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View all trials with filters →No actively recruiting trials found for Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy at this time.
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Specialists
View all specialists →No specialists are currently listed for Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy.
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 Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy.
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.What is the exact type of limb difference my child has, and is it part of a larger syndrome?,Should we pursue genetic testing, and what would the results mean for our family?,When is the best time to do surgery, and how many procedures might be needed?,What kind of hand or foot function can we expect after treatment?,Will my child need occupational or physical therapy, and for how long?,What is the chance this condition could occur again in a future pregnancy?,Are there any other body systems we should check for related problems?
Common questions about Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy
What is Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy?
Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy refers to a group of rare congenital conditions in which babies are born with extra fingers or toes (polydactyly), fused fingers or toes (syndactyly), extra bones within the fingers or toes (hyperphalangy), or duplication of parts of the limbs. These conditions are present at birth and are caused by problems during early development when the hands and feet are forming in the womb. The severity can vary widely — some individuals may have only a small extra finger, while others may have more complex limb differences in
At what age does Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy typically begin?
Typical onset of Syndrome with limb duplication, polydactyly, syndactyly, and/or hyperphalangy is neonatal. Age of onset can vary across affected individuals.