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 Gorham-Stout disease hub →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
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.
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Gorham-Stout disease, filtered to your area.
Tomeko shows live, recruiting studies for Gorham-Stout disease from ClinicalTrials.gov on the hub.