Overview
SAPHO syndrome stands for Synovitis, Acne, Pustulosis, Hyperostosis, and Osteitis. It is a rare condition that affects the bones, joints, and skin. When it begins during childhood or the teenage years, it is referred to as juvenile-onset SAPHO syndrome. This Orphanet entry (324989) is now marked as obsolete, meaning it has been retired or merged into the broader SAPHO syndrome classification. The condition causes painful inflammation in the bones (osteitis) and excessive bone growth (hyperostosis), most commonly in the chest wall, spine, and long bones. Skin problems such as severe acne or pustulosis (blistering skin rash, often on the palms and soles) frequently accompany the bone symptoms. Joint swelling and pain (synovitis) can also occur. The exact cause of SAPHO syndrome is not fully understood, but it is thought to involve an abnormal immune or inflammatory response. Treatment focuses on controlling pain and inflammation using nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, bisphosphonates, and sometimes biologic medications. In children and teenagers, early recognition and treatment are important to prevent bone damage and support normal growth and development. The disease tends to follow a relapsing and remitting course, meaning symptoms can flare up and then improve over time.
Key symptoms:
Bone pain, especially in the chest wall, spine, or long bonesSwollen and painful jointsSevere acne, often on the face, back, or chestBlistering skin rash on the palms of the hands or soles of the feetExcessive bone growth visible on imagingStiffness in the joints, especially in the morningTenderness over the collarbone or breastboneFatigueFever during flare-upsReduced range of motion in affected jointsSwelling near the affected bones
Sporadic
Usually appears on its own, not inherited from a parent
Juvenile
Begins in the teen years
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Juvenile-onset SAPHO syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for OBSOLETE: Juvenile-onset SAPHO syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Juvenile-onset SAPHO syndrome.
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: Juvenile-onset SAPHO syndrome.
Community
No community posts yet. Be the first to share your experience with OBSOLETE: Juvenile-onset SAPHO syndrome.
Start the conversation →Latest news about OBSOLETE: Juvenile-onset SAPHO syndrome
No recent news articles for OBSOLETE: Juvenile-onset SAPHO syndrome.
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.What specific type of SAPHO syndrome does my child have, and how severe is it?,What treatment options are best for my child's age and symptoms?,How will we monitor for bone damage or complications over time?,Are there any activities my child should avoid during flare-ups?,What are the side effects of the recommended medications?,How often will my child need follow-up imaging or blood tests?,Should my child see a dermatologist for the skin symptoms as well?
Common questions about OBSOLETE: Juvenile-onset SAPHO syndrome
What is OBSOLETE: Juvenile-onset SAPHO syndrome?
SAPHO syndrome stands for Synovitis, Acne, Pustulosis, Hyperostosis, and Osteitis. It is a rare condition that affects the bones, joints, and skin. When it begins during childhood or the teenage years, it is referred to as juvenile-onset SAPHO syndrome. This Orphanet entry (324989) is now marked as obsolete, meaning it has been retired or merged into the broader SAPHO syndrome classification. The condition causes painful inflammation in the bones (osteitis) and excessive bone growth (hyperostosis), most commonly in the chest wall, spine, and long bones. Skin problems such as severe acne or pus
How is OBSOLETE: Juvenile-onset SAPHO syndrome inherited?
OBSOLETE: Juvenile-onset SAPHO syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does OBSOLETE: Juvenile-onset SAPHO syndrome typically begin?
Typical onset of OBSOLETE: Juvenile-onset SAPHO syndrome is juvenile. Age of onset can vary across affected individuals.