Overview
Multicentric osteolysis-nodulosis-arthropathy (MONA) spectrum is a rare inherited bone and joint disorder. It is also known by names such as nodulosis-arthropathy-osteolysis syndrome (NAO syndrome) or torg syndrome. This condition primarily affects the bones, joints, and skin. In MONA spectrum, the body gradually breaks down bone tissue (a process called osteolysis), especially in the hands and feet. This bone loss leads to pain, deformity, and reduced function over time. Patients often develop firm lumps or nodules under the skin, particularly on the palms and soles. Joint problems including swelling, stiffness, and pain (arthropathy) are also common and can significantly limit movement. The disease typically begins in childhood and progresses over the years. Some patients may also develop heart valve problems or other organ involvement. The condition is caused by mutations in the MMP2 gene, which provides instructions for making an enzyme important for normal tissue remodeling. Treatment is mainly supportive, focusing on managing pain, preserving joint function, and addressing complications. There is currently no cure, and management involves a team of specialists including orthopedic surgeons, rheumatologists, and geneticists. Physical therapy and sometimes surgery may be needed to maintain mobility and quality of life.
Also known as:
Key symptoms:
Bone loss in the hands and feetFirm lumps or nodules under the skinJoint pain and swellingJoint stiffness and reduced range of motionShortening or deformity of fingers and toesOsteoporosis or weakened bonesCoarsened facial featuresGum overgrowth (gingival hypertrophy)Short statureHeart valve problemsSkin thickeningDifficulty gripping or using handsDifficulty walking due to foot deformitiesEye problems in some cases
Clinical phenotype terms (39)— hover any for plain English
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Multicentric osteolysis-nodulosis-arthropathy spectrum.
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Specialists
View all specialists →No specialists are currently listed for Multicentric osteolysis-nodulosis-arthropathy spectrum.
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 Multicentric osteolysis-nodulosis-arthropathy spectrum.
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.How severe is the bone loss currently, and how fast is it likely to progress?,Should my child have a heart evaluation to check for valve problems?,What physical therapy or occupational therapy programs would be most helpful?,Are there any medications that could slow down the bone loss?,What school or workplace accommodations should we request?,How often should imaging and follow-up appointments be scheduled?,Are there any clinical trials or research studies we could participate in?
Common questions about Multicentric osteolysis-nodulosis-arthropathy spectrum
What is Multicentric osteolysis-nodulosis-arthropathy spectrum?
Multicentric osteolysis-nodulosis-arthropathy (MONA) spectrum is a rare inherited bone and joint disorder. It is also known by names such as nodulosis-arthropathy-osteolysis syndrome (NAO syndrome) or torg syndrome. This condition primarily affects the bones, joints, and skin. In MONA spectrum, the body gradually breaks down bone tissue (a process called osteolysis), especially in the hands and feet. This bone loss leads to pain, deformity, and reduced function over time. Patients often develop firm lumps or nodules under the skin, particularly on the palms and soles. Joint problems including
How is Multicentric osteolysis-nodulosis-arthropathy spectrum inherited?
Multicentric osteolysis-nodulosis-arthropathy spectrum follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Multicentric osteolysis-nodulosis-arthropathy spectrum typically begin?
Typical onset of Multicentric osteolysis-nodulosis-arthropathy spectrum is childhood. Age of onset can vary across affected individuals.