Overview
NAME syndrome is a very rare condition that affects multiple parts of the body. The name is actually an acronym that stands for Nevi (unusual moles or skin growths), Atrial myxoma (a benign tumor that grows inside the heart), Myxoid neurofibromas (soft tissue growths under the skin), and Ephelides (freckles). It is closely related to — and sometimes considered part of — a broader condition called Carney complex. Some doctors use the terms NAME syndrome and Carney complex interchangeably, while others treat them as overlapping but slightly different diagnoses. The condition mainly affects the skin, heart, and hormone-producing glands. People with NAME syndrome can develop unusual pigmented spots on their skin, benign tumors in the heart that can block blood flow or cause dangerous heart rhythms, and growths in various tissues throughout the body. The hormone system may also be affected, sometimes causing the body to produce too much cortisol, a condition called Cushing syndrome. Treatment focuses on managing each problem as it appears. Heart tumors are usually removed with surgery. Skin changes are monitored closely. Hormone problems are treated with medication or surgery depending on the cause. There is no single cure for NAME syndrome, but with careful monitoring and timely treatment, many complications can be managed effectively.
Key symptoms:
Unusual pigmented spots or moles on the skin, especially on the face and lipsFreckles in unusual locations such as the lips, eyelids, or genitalsBenign tumors inside the heart (atrial myxomas) that can cause heart problemsSoft lumps under the skin (myxoid neurofibromas)Overproduction of cortisol by the adrenal glands (Cushing syndrome)Unusual skin growths called blue neviTumors of the thyroid glandTumors of the testicles in malesTumors of the pituitary gland in the brainIrregular heartbeat or heart murmurUnexplained weight gain and round face shape from hormone imbalanceEasy bruising or stretch marks from excess cortisol
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
Treatments
No FDA-approved treatments are currently listed for NAME syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for NAME syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Rare Disease Specialist
Rare Disease Specialist
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 NAME syndrome.
Community
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Caregiver Resources
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Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.Which organs should I be screening regularly, and how often?,Should my family members be tested for the PRKAR1A gene mutation?,What are the warning signs that a heart tumor has come back, and what should I do if I notice them?,Do I have signs of Cushing syndrome, and if so, what treatment options are available?,Are there any clinical trials or research studies I could participate in?,What specialists should be part of my long-term care team?,Are there any activities or medications I should avoid because of my condition?
Common questions about NAME syndrome
What is NAME syndrome?
NAME syndrome is a very rare condition that affects multiple parts of the body. The name is actually an acronym that stands for Nevi (unusual moles or skin growths), Atrial myxoma (a benign tumor that grows inside the heart), Myxoid neurofibromas (soft tissue growths under the skin), and Ephelides (freckles). It is closely related to — and sometimes considered part of — a broader condition called Carney complex. Some doctors use the terms NAME syndrome and Carney complex interchangeably, while others treat them as overlapping but slightly different diagnoses. The condition mainly affects the
How is NAME syndrome inherited?
NAME syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat NAME syndrome?
12 specialists and care centers treating NAME syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.