OBSOLETE: Acheiria, bilateral

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ORPHA:295103
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8Treatment centers

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Overview

Bilateral acheiria is a rare congenital limb difference in which a baby is born without both hands. The term 'acheiria' comes from Greek, meaning 'without hands.' In this condition, the hands fail to develop during early pregnancy, typically during the first few weeks when the limbs are forming. The arms may be present to varying degrees — some individuals have forearms that end at or near the wrist, while others may have shorter forearms. This condition is present at birth and is not progressive, meaning it does not get worse over time. Because this Orphanet entry is marked as 'OBSOLETE,' it may have been reclassified or merged into a broader category of congenital limb reduction defects. Bilateral acheiria can occur as an isolated finding or as part of a broader syndrome involving other birth differences. The exact cause is often unknown, though it may result from disruptions in blood flow to the developing limbs, genetic factors, or environmental exposures during pregnancy. There is no cure that can restore the missing hands, but treatment focuses on maximizing function and independence. This includes prosthetic devices, occupational therapy, and adaptive equipment. Many individuals with bilateral acheiria lead full, active, and independent lives with appropriate support. Early intervention with pediatric rehabilitation specialists can help children develop skills for daily activities, school, and play.

Also known as:

Key symptoms:

Absence of both hands from birthArms that end at or near the wristDifficulty grasping objectsDifficulty with fine motor tasks like writing or buttoning clothesPossible differences in forearm lengthChallenges with self-care activities like dressing and eatingPossible associated limb differences in some cases

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Acheiria, bilateral.

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No actively recruiting trials found for OBSOLETE: Acheiria, bilateral at this time.

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No specialists are currently listed for OBSOLETE: Acheiria, bilateral.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to OBSOLETE: Acheiria, bilateral.

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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 condition isolated, or could it be part of a broader syndrome?,Should we pursue genetic testing to look for an underlying cause?,At what age should we start fitting prosthetic devices?,What type of prosthesis would be most appropriate for my child?,How often should we see an occupational therapist?,Are there any clinical trials or new technologies we should know about?,Can you recommend support groups or organizations for families affected by limb differences?

Common questions about OBSOLETE: Acheiria, bilateral

What is OBSOLETE: Acheiria, bilateral?

Bilateral acheiria is a rare congenital limb difference in which a baby is born without both hands. The term 'acheiria' comes from Greek, meaning 'without hands.' In this condition, the hands fail to develop during early pregnancy, typically during the first few weeks when the limbs are forming. The arms may be present to varying degrees — some individuals have forearms that end at or near the wrist, while others may have shorter forearms. This condition is present at birth and is not progressive, meaning it does not get worse over time. Because this Orphanet entry is marked as 'OBSOLETE,' it

At what age does OBSOLETE: Acheiria, bilateral typically begin?

Typical onset of OBSOLETE: Acheiria, bilateral is neonatal. Age of onset can vary across affected individuals.