Just diagnosed with Gorham-Stout disease?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Gorham-Stout disease, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Gorham-Stout disease hub →Overview
Gorham-Stout disease is a rare condition. Also known as Gorham disease, Gorham syndrome, Idiopathic massive osteolysis, Progressive massive osteolysis, Vanishing bone disease. Tomeko brings together the specialists, research, clinical trials, treatments and community for Gorham-Stout disease so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:73 · OMIM 123880 · ICD-10 M89.5 · GARD 0006542
Find care for Gorham-Stout disease
Authoritative references for Gorham-Stout disease
Research & market landscape for Gorham-Stout disease
Following Gorham-Stout disease for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Gorham-Stout disease — the real-world landscape behind the condition, in one place.
- Latest Gorham-Stout disease research on PubMed ↗
- Recruiting Gorham-Stout disease trials on ClinicalTrials.gov ↗
- Explore the Gorham-Stout 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 Gorham-Stout disease and every rare condition. See how Tomeko works with industry →
Common questions
What is Gorham-Stout disease?
Gorham-Stout disease is a rare condition. Also known as Gorham disease, Gorham syndrome, Idiopathic massive osteolysis, Progressive massive osteolysis, Vanishing bone disease. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Gorham-Stout disease together in one place.
What are the symptoms of Gorham-Stout disease?
Symptoms of Gorham-Stout 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 Gorham-Stout disease.
How is Gorham-Stout disease treated?
Treatment for Gorham-Stout disease depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Gorham-Stout disease, and review current options with them.
What causes Gorham-Stout disease — is it genetic?
The cause and inheritance of Gorham-Stout disease are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Gorham-Stout disease can explain what it means for you and your family.
I was just diagnosed with Gorham-Stout disease — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Gorham-Stout disease, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Gorham-Stout disease?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Gorham-Stout disease, filtered to your area.
Are there clinical trials for Gorham-Stout disease?
Tomeko shows live, recruiting studies for Gorham-Stout disease from ClinicalTrials.gov on the hub.
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