Congenital panfollicular nevus

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Overview

Congenital panfollicular nevus is an extremely rare skin condition that is present at birth. It is a type of nevus, which is a benign (non-cancerous) growth or birthmark on the skin. In this condition, the nevus involves all parts of the hair follicle structure, which is why it is called 'panfollicular' — meaning it affects the entire follicle. The condition falls under the broader category of non-neoplastic nevi, which are developmental skin markings that are not tumors. Because this condition is so rare, detailed medical literature is very limited. The affected area of skin may appear as a distinct patch or plaque that differs in color, texture, or hair growth compared to surrounding normal skin. The lesion is typically noticed at birth or in early infancy. Treatment is generally not required unless the nevus causes cosmetic concerns or complications. In some cases, surgical removal may be considered. Because so few cases have been reported, the full range of features and long-term outlook is not completely understood. Patients with this condition should be evaluated by a dermatologist familiar with rare skin nevi to confirm the diagnosis and discuss any management options.

Key symptoms:

Unusual skin patch or birthmark present at birthAbnormal hair growth in the affected areaSkin plaque with different texture than surrounding skinDiscolored area of skinThickened or raised skin lesion

Clinical phenotype terms (6)— hover any for plain English
HamartomaHP:0010566Verrucous papuleHP:0012500
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Congenital panfollicular nevus.

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No actively recruiting trials found for Congenital panfollicular nevus at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Congenital panfollicular nevus community →

No specialists are currently listed for Congenital panfollicular nevus.

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 Congenital panfollicular nevus.

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Community

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Latest news about Congenital panfollicular nevus

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Caregiver Resources

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Mental Health Support

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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.Can you confirm this is a congenital panfollicular nevus and not another type of birthmark?,Is a skin biopsy needed to confirm the diagnosis?,Is there any risk of this lesion becoming cancerous over time?,Should this birthmark be surgically removed, or is observation sufficient?,How often should we schedule follow-up skin examinations?,Are there any signs of change I should watch for at home?,Could this condition be related to any other health issues?

Common questions about Congenital panfollicular nevus

What is Congenital panfollicular nevus?

Congenital panfollicular nevus is an extremely rare skin condition that is present at birth. It is a type of nevus, which is a benign (non-cancerous) growth or birthmark on the skin. In this condition, the nevus involves all parts of the hair follicle structure, which is why it is called 'panfollicular' — meaning it affects the entire follicle. The condition falls under the broader category of non-neoplastic nevi, which are developmental skin markings that are not tumors. Because this condition is so rare, detailed medical literature is very limited. The affected area of skin may appear as a d

How is Congenital panfollicular nevus inherited?

Congenital panfollicular nevus follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Congenital panfollicular nevus typically begin?

Typical onset of Congenital panfollicular nevus is neonatal. Age of onset can vary across affected individuals.