Overview
Familial Atypical Multiple Mole Melanoma syndrome, often called FAMMM syndrome or Dysplastic Nevus Syndrome, is an inherited condition that greatly increases a person's risk of developing melanoma, the most serious type of skin cancer. People with FAMMM syndrome typically have a large number of moles (often 50 or more), and many of these moles look unusual or "atypical" — they may be larger than normal, have irregular borders, or show uneven coloring. The condition runs in families, and at least one close relative (parent, sibling, or child) will also have had melanoma. Beyond skin melanoma, people with FAMMM syndrome may also face a higher risk of other cancers, particularly pancreatic cancer. Some families carry changes in the CDKN2A gene, which normally helps control cell growth. When this gene is not working properly, cells can grow out of control and become cancerous. There is currently no cure for FAMMM syndrome itself, but early detection and prevention are very effective. Regular full-body skin exams by a dermatologist, self-skin checks at home, sun protection, and in some cases pancreatic cancer screening can significantly improve outcomes. When melanoma is caught early, it is highly treatable. Management focuses on lifelong surveillance and prompt removal of any suspicious moles or skin changes.
Also known as:
Key symptoms:
Large number of moles (often 50 or more)Moles that look unusual with irregular shape, uneven color, or blurry bordersMoles that are larger than a pencil eraserNew moles appearing over timeMoles that change in size, shape, or colorDevelopment of melanoma skin cancer, sometimes at a young ageFamily history of melanoma in multiple relativesMoles appearing on areas not usually exposed to the sunIncreased risk of pancreatic cancer in some familiesPossible increased risk of other cancers such as breast cancer or eye melanoma
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
6 eventsJohn Kirkwood
Dana-Farber Cancer Institute
Associazione Italiana per lo Studio del Pancreas
Abraxane: FDA approved
Treatment of metastatic adenocarcinoma of the pancreas as first-line treatment, in combination with gemcitabine.
National Cancer Institute (NCI)
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableAbraxane
Treatment of metastatic adenocarcinoma of the pancreas as first-line treatment, in combination with gemcitabine.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Familial atypical multiple mole melanoma syndrome.
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1 articlesCaregiver 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.How often should I have full-body skin exams, and should I use total body photography?,Should I be screened for pancreatic cancer, and if so, how often and starting at what age?,Should my family members be tested for the CDKN2A gene mutation?,What specific signs should I watch for when doing self-skin exams at home?,Are there any clinical trials or new prevention strategies I should know about?,What sun protection measures are most important for me and my children?,How will having this syndrome affect my children's health, and when should they start screening?
Common questions about Familial atypical multiple mole melanoma syndrome
What is Familial atypical multiple mole melanoma syndrome?
Familial Atypical Multiple Mole Melanoma syndrome, often called FAMMM syndrome or Dysplastic Nevus Syndrome, is an inherited condition that greatly increases a person's risk of developing melanoma, the most serious type of skin cancer. People with FAMMM syndrome typically have a large number of moles (often 50 or more), and many of these moles look unusual or "atypical" — they may be larger than normal, have irregular borders, or show uneven coloring. The condition runs in families, and at least one close relative (parent, sibling, or child) will also have had melanoma. Beyond skin melanoma,
How is Familial atypical multiple mole melanoma syndrome inherited?
Familial atypical multiple mole melanoma syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Familial atypical multiple mole melanoma syndrome?
Yes — 4 recruiting clinical trials are currently listed for Familial atypical multiple mole melanoma syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Familial atypical multiple mole melanoma syndrome?
10 specialists and care centers treating Familial atypical multiple mole melanoma syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.