CNO/CRMO
CNO Family Handbook
What CNO is, how it is diagnosed and treated, and what daily life looks like — written for families and reviewed against published clinical literature. Educational only, not medical advice.
Resources
Community, not just the clinic.
Community organizations, educational resources, and research programs for people and families living with CNO/CRMO, and for related conditions we may support later.
Who it's for now
Starting with CNO/CRMO.
The public beta is focused on chronic nonbacterial osteomyelitis. CRMO is a common name for it, especially when it recurs in several places.
CNO/CRMO
Chronic nonbacterial osteomyelitis (CNO). CRMO is a common name for it, especially when it recurs in several places.
Roadmap
Future conditions we're exploring.
We are exploring how the same approach could eventually support these conditions. Condition-specific experiences are not yet available.
JIA
Juvenile idiopathic arthritis, including systemic JIA.
Periodic fevers
Periodic fever syndromes, including PFAPA and other autoinflammatory fever conditions.
Chronic pain
Persistent pain, including pain alongside a rheumatic diagnosis and juvenile fibromyalgia.
Coming later
More conditions further out.
The same check-in is built around the pattern of a flare, so it can extend. These conditions are further out than the ones we're exploring first.
JDM
Juvenile dermatomyositis, including calcinosis and treatment outcomes.
SLE
Systemic lupus erythematosus, including lupus nephritis and neuropsychiatric lupus.
Other rheumatic and autoinflammatory disease
Including pediatric scleroderma, vasculitis, childhood Sjögren disease, Kawasaki disease, and inflammatory brain disease.
Community resources
Organizations around these conditions.
- CNO
CRMO: Chronic recurrent multifocal osteomyelitis (opens in a new tab)
A Facebook community of patients, families and caregivers affected by CRMO/CNO. Share experiences, ask questions, and connect with others who understand the journey.
- Research
CARRA (opens in a new tab)
The Childhood Arthritis and Rheumatology Research Alliance conducts collaborative research to prevent, treat and cure pediatric rheumatic diseases. Families can join workgroups and help shape studies.
- Research
CARRA / Seattle Children's Natural History Study (opens in a new tab)
A CARRA and Seattle Children's Hospital natural history study of CNO/CRMO, led by Dr. Dan Zhao and funded by an FDA Natural History Studies Grant. It follows how the disease changes over time, how second-line treatments work, and which outcome measures hold up.
- CNO
Seattle Children's CRMO Program (opens in a new tab)
The dedicated CRMO program in the Pacific Northwest, led by Dr. Dan Zhao, offering specialized diagnosis, treatment and research. Home to the CHOIR registry.
- CNO
University of Iowa (opens in a new tab)
Aleksander Lenert and Polly Ferguson lead CNO/CRMO care and research at the University of Iowa, including pediatric CNO and adult SAPHO-CNO. The Lenert Lab runs an NIH-funded observational study of adults with SAPHO-CNO.
- CNO
Kaila's Komfort (opens in a new tab)
A 501(c)(3) nonprofit providing comfort care packages to children and adults diagnosed with CRMO around the world. Founded by a CRMO patient.
- JIA
Arthritis Foundation (opens in a new tab)
Resources, events and information for families on the juvenile arthritis journey. Connect Groups are open to parents and caregivers of a child with a rheumatic disease.
- Periodic fevers
Autoinflammatory Alliance (opens in a new tab)
A 501(c)(3) dedicated to awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases, including periodic fever syndromes.
Coming later
The wider community, for when we get there.
- SLE
Lupus Foundation of America (opens in a new tab)
Improves the quality of life for all people affected by lupus through programs of research, education, support and advocacy.
- JDM
Cure JM Foundation (opens in a new tab)
Finds a cure and better treatments for juvenile myositis, and improves the lives of families affected by the disease.
- Scleroderma
National Scleroderma Foundation (opens in a new tab)
Advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks.
- Vasculitis
Vasculitis Foundation (opens in a new tab)
A global community advancing research, education, and support for everyone affected by vasculitis, including online support groups for patients and families.
- Sjögren disease
Sjögren's Foundation (opens in a new tab)
Education, research, advocacy, and patient support for Sjögren's, a systemic autoimmune disease.
- Kawasaki disease
Kawasaki Disease Foundation (opens in a new tab)
Raises awareness, supports affected families, and funds research. The first nonprofit in the United States focused on Kawasaki disease.
- Inflammatory brain disease
Autoimmune Encephalitis Alliance (opens in a new tab)
A community of patients, families and caregivers, plus education and research, so no one faces autoimmune encephalitis alone.
Need more help?
We're here on the journey.
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