Just diagnosed with Castleman-Kojima disease?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Castleman-Kojima disease, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Castleman-Kojima disease hub →Overview
Castleman-Kojima disease is a rare condition. Also known as Thrombocytopenia-anasarca-fever-renal insufficiency-organomegaly syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Castleman-Kojima disease so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:457077 · ICD-10 M35.8 · GARD 0021902
Find care for Castleman-Kojima disease
Authoritative references for Castleman-Kojima disease
Research & market landscape for Castleman-Kojima disease
Following Castleman-Kojima disease for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Castleman-Kojima disease — the real-world landscape behind the condition, in one place.
- Latest Castleman-Kojima disease research on PubMed ↗
- Recruiting Castleman-Kojima disease trials on ClinicalTrials.gov ↗
- Explore the Castleman-Kojima disease research & specialist footprint on Tomeko
Researchers, patient organizations & industry: Tomeko provides de-identified, no-PHI demand and engagement signal, trial awareness, and a labeled, editorially-firewalled presence for Castleman-Kojima disease and every rare condition. See how Tomeko works with industry →
Common questions
What is Castleman-Kojima disease?
Castleman-Kojima disease is a rare condition. Also known as Thrombocytopenia-anasarca-fever-renal insufficiency-organomegaly syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Castleman-Kojima disease together in one place.
What are the symptoms of Castleman-Kojima disease?
Symptoms of Castleman-Kojima disease vary from person to person. For a reviewed, plain-language overview see the authoritative references below (NIH GARD, Orphanet), and discuss your own symptoms with a clinician who treats Castleman-Kojima disease.
How is Castleman-Kojima disease treated?
Treatment for Castleman-Kojima disease depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Castleman-Kojima disease, and review current options with them.
What causes Castleman-Kojima disease — is it genetic?
The cause and inheritance of Castleman-Kojima disease are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Castleman-Kojima disease can explain what it means for you and your family.
I was just diagnosed with Castleman-Kojima disease — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Castleman-Kojima disease, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Castleman-Kojima disease?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Castleman-Kojima disease, filtered to your area.
Are there clinical trials for Castleman-Kojima disease?
Tomeko shows live, recruiting studies for Castleman-Kojima disease from ClinicalTrials.gov on the hub.
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