Overview
Familial ossifying fibroma (also called familial juvenile ossifying fibroma or hereditary ossifying fibroma) is a rare inherited condition that causes abnormal growths to form in the bones of the face and jaw. These growths are made up of a mix of fibrous (scar-like) tissue and bone-like material. Unlike normal bone, these lesions do not form properly and can expand over time, distorting the shape of the face and jaw. The condition is called 'familial' because it tends to run in families, meaning it is passed down through generations. The most commonly affected areas are the upper and lower jaw bones, the bones around the eye sockets, and the skull. Growths can appear in childhood or early adulthood and may grow slowly over time. Some people have only mild changes, while others develop larger lesions that cause noticeable facial changes, problems with teeth alignment, vision issues, or difficulty breathing through the nose. Treatment usually involves surgery to remove or reduce the growths. However, because the lesions can come back after surgery, ongoing monitoring is very important. There is no medication that stops the growths from forming. A team of specialists including oral surgeons, maxillofacial surgeons, and geneticists typically work together to manage this condition.
Also known as:
Key symptoms:
Swelling or lumps in the jaw or faceFacial asymmetry or distortion of facial shapeTeeth that are misaligned or displacedLoose or missing teethDifficulty chewing or bitingBulging or displacement of the eyeVision changes if growths press on the eye socketNasal blockage or difficulty breathing through the noseHeadaches related to bone changesSlow-growing painless masses in the jaw area
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Juvenile
Begins in the teen years
Treatments
No FDA-approved treatments are currently listed for Familial ossifying fibroma.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Familial ossifying fibroma at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Familial ossifying fibroma.
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 ossifying fibroma.
Community
No community posts yet. Be the first to share your experience with Familial ossifying fibroma.
Start the conversation →Latest news about Familial ossifying fibroma
No recent news articles for Familial ossifying fibroma.
Follow this condition to be notified when news becomes available.
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.Which gene is likely causing this condition in our family, and should other family members be tested?,How often should my child have imaging to monitor for new or returning growths?,What are the signs that a growth needs urgent surgical attention?,Are there any clinical trials or new treatments being studied for this condition?,What type of surgeon has the most experience treating familial ossifying fibroma?,How likely is it that the growth will come back after surgery, and what can we do to reduce that risk?,Should we see a psychologist or counselor to help with the emotional impact of this diagnosis?
Common questions about Familial ossifying fibroma
What is Familial ossifying fibroma?
Familial ossifying fibroma (also called familial juvenile ossifying fibroma or hereditary ossifying fibroma) is a rare inherited condition that causes abnormal growths to form in the bones of the face and jaw. These growths are made up of a mix of fibrous (scar-like) tissue and bone-like material. Unlike normal bone, these lesions do not form properly and can expand over time, distorting the shape of the face and jaw. The condition is called 'familial' because it tends to run in families, meaning it is passed down through generations. The most commonly affected areas are the upper and lower j
How is Familial ossifying fibroma inherited?
Familial ossifying fibroma follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Familial ossifying fibroma typically begin?
Typical onset of Familial ossifying fibroma is juvenile. Age of onset can vary across affected individuals.