Overview
Congenital absence or hypoplasia of fingers excluding the thumb, bilateral, is a rare condition present at birth where a baby is born with missing or underdeveloped fingers on both hands, while the thumbs remain normal or relatively unaffected. This condition is classified as a limb malformation. The term 'congenital' means it is present from birth, 'hypoplasia' means the fingers are smaller or less developed than normal, and 'bilateral' means both hands are affected. This condition can range in severity. Some children may have fingers that are shorter than usual but still functional, while others may have fingers that are almost entirely absent. Because the thumbs are spared, many children retain a significant degree of hand function, including the ability to grasp objects. The condition may occur on its own (isolated) or as part of a broader syndrome involving other body systems. Note: This entry is marked as 'OBSOLETE' in the Orphanet classification, meaning it may have been reclassified or merged into a different diagnostic category. Patients and families should work with their medical team to determine the most current and accurate diagnosis. Treatment typically focuses on maximizing hand function through occupational therapy, adaptive devices, and in some cases reconstructive surgery. Early intervention is important to help children develop fine motor skills and independence.
Also known as:
Key symptoms:
Missing fingers on both hands (excluding the thumbs)Underdeveloped or shortened fingers on both handsDifficulty gripping small objectsReduced hand dexterityPossible stiffness in remaining finger jointsDifficulty with fine motor tasks like buttoning clothes or writingAsymmetry in finger length or number between handsPossible nail abnormalities on affected fingers
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: Congenital absence/hypoplasia of fingers excluding thumb, bilateral.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Congenital absence/hypoplasia of fingers excluding thumb, 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: Congenital absence/hypoplasia of fingers excluding thumb, 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.Is this condition isolated or could it be part of a broader syndrome?,Should we pursue genetic testing, and what might it tell us?,What surgical options are available to improve hand function?,When should occupational therapy begin, and how often?,Are there prosthetic or adaptive devices that could help my child?,What school accommodations should we request?,Are there other specialists we should see?
Common questions about OBSOLETE: Congenital absence/hypoplasia of fingers excluding thumb, bilateral
What is OBSOLETE: Congenital absence/hypoplasia of fingers excluding thumb, bilateral?
Congenital absence or hypoplasia of fingers excluding the thumb, bilateral, is a rare condition present at birth where a baby is born with missing or underdeveloped fingers on both hands, while the thumbs remain normal or relatively unaffected. This condition is classified as a limb malformation. The term 'congenital' means it is present from birth, 'hypoplasia' means the fingers are smaller or less developed than normal, and 'bilateral' means both hands are affected. This condition can range in severity. Some children may have fingers that are shorter than usual but still functional, while o
At what age does OBSOLETE: Congenital absence/hypoplasia of fingers excluding thumb, bilateral typically begin?
Typical onset of OBSOLETE: Congenital absence/hypoplasia of fingers excluding thumb, bilateral is neonatal. Age of onset can vary across affected individuals.