Overview
Adactyly of the hand is a rare congenital limb condition in which a baby is born without fingers (digits) on one or both hands. The term 'adactyly' literally means 'absence of digits.' This condition is present at birth and is typically noticed immediately after delivery. It falls under the broader category of limb reduction defects, where parts of the hand fail to form properly during fetal development. It is important to note that this specific Orphanet entry (294931) is marked as 'OBSOLETE,' meaning it has been retired or merged into a broader or more accurately defined classification of limb malformations. Patients and families searching for information about missing fingers at birth may find more relevant and up-to-date resources under related terms such as 'terminal transverse limb defects,' 'ectrodactyly,' or other congenital hand anomalies. The absence of fingers can significantly affect hand function, grip, and fine motor skills. Treatment typically focuses on maximizing hand function through prosthetics, adaptive devices, occupational therapy, and in some cases reconstructive surgery. The condition can occur in isolation or as part of a broader syndrome involving other body systems. Early intervention with a specialized hand team can greatly improve outcomes and quality of life for affected children.
Also known as:
Key symptoms:
Absence of one or more fingers at birthMissing all fingers on one or both handsReduced grip strengthDifficulty with fine motor tasks like grasping small objectsHand may appear as a rounded stump at the end of the wrist or palmPossible shortening of the hand or palmDifficulty with tasks requiring pinching or holdingPossible associated limb differences on the same or opposite side
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: Adactyly of hand.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Adactyly of hand.
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: Adactyly of hand.
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.Is my child's adactyly isolated, or could it be part of a broader syndrome?,Should we pursue genetic testing to understand the cause?,What are the best options for improving hand function — therapy, prosthetics, or surgery?,At what age should we consider prosthetic devices, and what types are available?,Is toe-to-hand transfer surgery an option for my child?,How can we best support our child's emotional well-being and self-esteem?,Are there support groups or organizations for families of children with limb differences?
Common questions about OBSOLETE: Adactyly of hand
What is OBSOLETE: Adactyly of hand?
Adactyly of the hand is a rare congenital limb condition in which a baby is born without fingers (digits) on one or both hands. The term 'adactyly' literally means 'absence of digits.' This condition is present at birth and is typically noticed immediately after delivery. It falls under the broader category of limb reduction defects, where parts of the hand fail to form properly during fetal development. It is important to note that this specific Orphanet entry (294931) is marked as 'OBSOLETE,' meaning it has been retired or merged into a broader or more accurately defined classification of l
At what age does OBSOLETE: Adactyly of hand typically begin?
Typical onset of OBSOLETE: Adactyly of hand is neonatal. Age of onset can vary across affected individuals.