You are not alone. Here is where to start: learn the basics, find a specialist or center that sees GNE myopathy, look for clinical trials, and connect with others living with it — all in one place.
Open the full GNE myopathy hub →GNE myopathy is a rare condition. Also known as DMRV, Distal myopathy with rimmed vacuoles, Distal myopathy, Nonaka type, HIBM2, Hereditary inclusion body myopathy type 2, IBM2, Inclusion body myopathy type 2, Nonaka myopathy. Tomeko brings together the specialists, research, clinical trials, treatments and community for GNE myopathy so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:602 · OMIM 605820, 617158 · ICD-10 G71.8 · GARD 0009493
Start by learning the basics from an authoritative source, find a specialist or center that sees GNE myopathy, 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 GNE myopathy, filtered to your area.
Tomeko shows live, recruiting studies for GNE myopathy from ClinicalTrials.gov on the hub.