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Living with Absent hand

A rare limb difference present at birth in which the hand and wrist are missing, on one or both sides.

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Understanding Absent hand

Absent hand is a rare limb difference in which the hand and wrist are totally missing from birth.

There are no bones past the radius or ulna. It is not part of a syndrome. It can affect one arm or both arms.

Signs & symptoms

GARD doesn't list specific symptoms for this condition yet.

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
See a specialist
Specialists who may be involved include bone and joint specialists and genetic specialists.
Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.

Care & treatment

Care team: Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
Expert care: Ask about multidisciplinary care centers for rare conditions
Treatment: GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research: Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

Connect with rare disease patient organizations for support
Keep notes on symptoms, changes and questions for appointments
Ask about patient registries that help research
Look into financial aid and travel resources for care visits

Bring these questions to your next doctor visit

What prosthetic and adaptive options are available?

Which therapists can help my child with daily skills?

Should we have genetic counseling for future pregnancies?

Quick facts

GARD says changes in genes (also called variants) cause this condition. It doesn't list a specific gene.

Genetic

Also known as: acheiria; agenesis of hand; congenital absence of hand

Patient organizations

Rare-disease groups that can help

Global GenesRare Diseases · United States
National Organization for Rare DisordersRare Diseases · United States
Genetic AllianceRare Diseases · United States
RARE FoundationRare Diseases · United States

Source: NIH GARD · Absent handGARD ID 21196 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Absent hand.

Explore the Absent hand blog

Broader resource

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Explore research for Absent hand

Explore actively recruiting Absent hand studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Absent hand with HealthSpark. Share your city to explore research near you.

Recruiting studies from ClinicalTrials.gov
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Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

HealthStoryfor Absent hand

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HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Absent hand experiences more deeply and prepare for better conversations with your doctors and care team.

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