Rare pediatric rheumatologic disease

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1Specialists8Treatment centers

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Overview

Chronic nonbacterial osteomyelitis (CNO), also called chronic recurrent multifocal osteomyelitis (CRMO), is a rare inflammatory disease that mainly affects children and teenagers. Unlike regular bone infections, CNO is not caused by bacteria or any germ. Instead, the immune system mistakenly attacks the bones, causing painful swelling and inflammation. Doctors consider it an autoinflammatory condition, meaning the body's own defense system triggers the problem without an outside infection. The disease most often affects the long bones of the legs and arms, the collarbone, the spine, and the pelvis. Children usually experience episodes of bone pain and swelling that come and go over months or years. Some children have just one or two affected spots, while others — especially those with the more severe form called CRMO — have many areas involved at the same time or over time. Treatment focuses on reducing inflammation and pain. Nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen are usually tried first. For children who do not respond, doctors may use bisphosphonates, corticosteroids, or biologic medications such as TNF inhibitors. While many children improve over time, some go on to have ongoing symptoms into adulthood. Early diagnosis and treatment are important to prevent bone damage and complications like spinal deformity.

Key symptoms:

Bone pain, often in the legs, arms, collarbone, or spineSwelling and warmth over affected bonesLimping or difficulty walkingBack pain or stiffnessFever (usually low-grade or absent)Fatigue and general tirednessReduced range of motion in nearby jointsSkin rashes such as psoriasis or palmoplantar pustulosis (blisters on palms and soles)Inflammatory bowel disease symptoms in some childrenVertebral (spine) compression in severe casesRecurrent flares of pain after periods of feeling better

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Rare pediatric rheumatologic disease.

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No actively recruiting trials found for Rare pediatric rheumatologic disease at this time.

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Specialists

1 foundView all specialists →
ZM
Zagorka Pejin, MD
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Rare pediatric rheumatologic disease.

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Community

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Latest news about Rare pediatric rheumatologic disease

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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 many bones are affected, and which ones are at greatest risk for damage?,What is the best treatment plan for my child right now, and when would you consider changing it?,How often does my child need MRI scans to monitor the disease?,Are there signs that my child's disease might be associated with skin or bowel problems?,What physical activities are safe during a flare, and what should my child avoid?,Is genetic testing recommended for our family?,What are the long-term risks if the disease is not well controlled?

Common questions about Rare pediatric rheumatologic disease

What is Rare pediatric rheumatologic disease?

Chronic nonbacterial osteomyelitis (CNO), also called chronic recurrent multifocal osteomyelitis (CRMO), is a rare inflammatory disease that mainly affects children and teenagers. Unlike regular bone infections, CNO is not caused by bacteria or any germ. Instead, the immune system mistakenly attacks the bones, causing painful swelling and inflammation. Doctors consider it an autoinflammatory condition, meaning the body's own defense system triggers the problem without an outside infection. The disease most often affects the long bones of the legs and arms, the collarbone, the spine, and the p

How is Rare pediatric rheumatologic disease inherited?

Rare pediatric rheumatologic disease follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Rare pediatric rheumatologic disease typically begin?

Typical onset of Rare pediatric rheumatologic disease is childhood. Age of onset can vary across affected individuals.

Which specialists treat Rare pediatric rheumatologic disease?

1 specialists and care centers treating Rare pediatric rheumatologic disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.