Overview
Frontonasal arteriovenous malformation (AVM) is a very rare vascular condition in which abnormal connections form between arteries and veins in the frontonasal region — the area around the forehead, nose, and midface. Normally, blood flows from arteries through tiny capillaries before reaching veins. In an AVM, blood passes directly from arteries to veins without going through capillaries, creating a tangled cluster of abnormal blood vessels. This can cause swelling, disfigurement, pain, and sometimes bleeding in the affected area. The condition may be present from birth or become noticeable during childhood or later in life. It is important to note that this specific Orphanet entry (141168) has been marked as 'OBSOLETE,' meaning the classification may have been merged into a broader category of craniofacial or extracranial arteriovenous malformations. Patients who were previously diagnosed under this term should work with their medical team to understand the current classification that applies to their condition. Treatment typically involves a combination of approaches including embolization (a procedure to block abnormal blood vessels), surgery, or both. Management is often complex and requires a multidisciplinary team. Because AVMs can grow or change over time, long-term monitoring is essential. The treatment landscape continues to evolve, with newer embolization techniques and surgical approaches improving outcomes for patients with craniofacial vascular malformations.
Key symptoms:
Visible swelling or mass on the forehead or nose areaSkin discoloration or redness over the affected areaA pulsating or throbbing feeling in the affected areaNosebleeds that may be difficult to controlPain or tenderness in the midface regionFacial asymmetry or disfigurementWarm skin over the malformationBleeding from the malformationDifficulty breathing through the noseVision problems if the malformation extends near the eyesHeadaches
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Frontonasal arteriovenous malformation.
View clinical trials →Clinical Trials
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Frontonasal arteriovenous malformation.
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 OBSOLETE: Frontonasal arteriovenous malformation.
Community
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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 is the exact size and extent of the arteriovenous malformation based on imaging?,What treatment approach do you recommend, and what are the risks and benefits?,How likely is the malformation to grow or recur after treatment?,How often will my child (or I) need follow-up imaging?,Are there any activities or situations I should avoid to prevent complications?,Should I be referred to a specialized vascular anomalies center?,Is genetic testing recommended to rule out an underlying syndrome?
Common questions about OBSOLETE: Frontonasal arteriovenous malformation
What is OBSOLETE: Frontonasal arteriovenous malformation?
Frontonasal arteriovenous malformation (AVM) is a very rare vascular condition in which abnormal connections form between arteries and veins in the frontonasal region — the area around the forehead, nose, and midface. Normally, blood flows from arteries through tiny capillaries before reaching veins. In an AVM, blood passes directly from arteries to veins without going through capillaries, creating a tangled cluster of abnormal blood vessels. This can cause swelling, disfigurement, pain, and sometimes bleeding in the affected area. The condition may be present from birth or become noticeable d
How is OBSOLETE: Frontonasal arteriovenous malformation inherited?
OBSOLETE: Frontonasal arteriovenous malformation follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.