Rare nevus

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ORPHA:294057
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11Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Rare nevus is a term used to describe uncommon types of moles or birthmarks on the skin that do not fit into the more common categories of nevi (the medical term for moles). Nevi are growths on the skin that occur when pigment-producing cells called melanocytes cluster together. While most moles are common and harmless, rare nevi are unusual in their appearance, location, size, or behavior. They may look different from typical moles in terms of color, shape, texture, or pattern. Rare nevi can appear at birth or develop later in life. Some types may be present from the newborn period, while others emerge during childhood or adulthood. In most cases, rare nevi are benign (not cancerous), but depending on the specific type, some may carry a slightly increased risk of developing into melanoma, a serious form of skin cancer. Because of this, monitoring by a dermatologist is important. Treatment depends on the specific type of rare nevus. Many do not require treatment and are simply monitored over time with regular skin checks. If a nevus shows concerning changes in size, shape, color, or texture, a biopsy may be recommended to rule out skin cancer. Surgical removal may be considered for cosmetic reasons or if there is concern about malignant transformation. The overall outlook for most people with rare nevi is good, especially with appropriate monitoring and early intervention when needed.

Key symptoms:

Unusual-looking mole or birthmark on the skinMole with an irregular shape or borderMole with unusual coloring or multiple colorsMole with an unusual texture or surfaceMole that is larger than typical molesSkin growth that looks different from other moles on the bodyA mole that changes in size, shape, or color over timeItching or discomfort around the moleA mole in an unusual location on the bodyCosmetic concerns related to the appearance of the mole

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Rare nevus.

View clinical trials →

No actively recruiting trials found for Rare nevus at this time.

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

Search ClinicalTrials.gov ↗Join the Rare nevus community →

Specialists

11 foundView all specialists →
BP
BioNTech Responsible Person
Specialist
PI on 18 active trials
AP
Antonio Martorell, PhD
Specialist
PI on 3 active trials
GM
Gianni Bisogno, MD
Specialist
PI on 2 active trials
PM
Philippe Bedard, MD
BROOKLYN, NY
Specialist
PI on 3 active trials
MM
Michael Heinrich, MD
Specialist
PI on 1 active trial

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 Rare nevus.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare nevus

No recent news articles for Rare nevus.

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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.What specific type of rare nevus does my child or I have?,Does this type of nevus carry an increased risk of skin cancer?,How often should we schedule skin check-ups for monitoring?,Are there any signs or changes I should watch for at home?,Should this nevus be removed, and if so, what are the options?,Is genetic testing recommended in our case?,What sun protection measures do you recommend?

Common questions about Rare nevus

What is Rare nevus?

Rare nevus is a term used to describe uncommon types of moles or birthmarks on the skin that do not fit into the more common categories of nevi (the medical term for moles). Nevi are growths on the skin that occur when pigment-producing cells called melanocytes cluster together. While most moles are common and harmless, rare nevi are unusual in their appearance, location, size, or behavior. They may look different from typical moles in terms of color, shape, texture, or pattern. Rare nevi can appear at birth or develop later in life. Some types may be present from the newborn period, while ot

Which specialists treat Rare nevus?

11 specialists and care centers treating Rare nevus are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.