Non-syndromic postaxial polydactyly

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Overview

Non-syndromic postaxial polydactyly (also called postaxial polydactyly type A and type B, or PAPA) is a condition where a person is born with one or more extra fingers on the little-finger side of the hand, or occasionally extra toes on the outer side of the foot. The word 'postaxial' means the extra digit grows on the pinky side of the limb, and 'non-syndromic' means this is the only feature — there are no other major health problems or birth defects linked to it. The extra digit can range from a small, soft skin tag (type B) to a fully formed finger with bones and joints (type A). This condition is present from birth and is one of the most common hand differences seen in newborns. It can affect one hand or both hands, and sometimes the feet as well. In most cases, the extra digit does not cause pain or limit how the hand works, but it can affect appearance and fine motor tasks. Treatment is usually straightforward: the extra digit is often removed surgically, especially if it is well-formed, and most children go on to have full hand function. The outlook is excellent for the vast majority of people with this condition.

Key symptoms:

Extra finger on the pinky side of one or both handsExtra toe on the outer side of one or both feetThe extra digit may be a small soft skin tag (type B) or a fully formed finger with bones (type A)The extra digit may or may not have a nailThe extra digit may be loosely attached or firmly connected to the handMild differences in hand appearanceOccasionally, minor difficulty with grip or fine motor tasks if the extra digit is large

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 Non-syndromic postaxial polydactyly.

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No actively recruiting trials found for Non-syndromic postaxial polydactyly at this time.

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No specialists are currently listed for Non-syndromic postaxial polydactyly.

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 Non-syndromic postaxial polydactyly.

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Community

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Questions for your doctor

Bring these to your next appointment

  • Q1.Does my child's extra finger have bones inside, and does that change the treatment plan?,When is the best time to have surgery, and what does the procedure involve?,What are the risks of surgery, and what results should I expect?,Should our family have genetic testing to understand why this happened and whether it could happen again?,Are there any other health checks needed to make sure this is truly non-syndromic — meaning no other conditions are involved?,Will my child need any therapy after surgery to help with hand function?,What should I watch for at home that would mean I need to contact you urgently?

Common questions about Non-syndromic postaxial polydactyly

What is Non-syndromic postaxial polydactyly?

Non-syndromic postaxial polydactyly (also called postaxial polydactyly type A and type B, or PAPA) is a condition where a person is born with one or more extra fingers on the little-finger side of the hand, or occasionally extra toes on the outer side of the foot. The word 'postaxial' means the extra digit grows on the pinky side of the limb, and 'non-syndromic' means this is the only feature — there are no other major health problems or birth defects linked to it. The extra digit can range from a small, soft skin tag (type B) to a fully formed finger with bones and joints (type A). This cond

At what age does Non-syndromic postaxial polydactyly typically begin?

Typical onset of Non-syndromic postaxial polydactyly is neonatal. Age of onset can vary across affected individuals.