You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Desmin-related myofibrillar myopathy, look for clinical trials, and connect with others living with it — all in one place.
Open the full Desmin-related myofibrillar myopathy hub →Desmin-related myofibrillar myopathy is a rare condition. Also known as Autosomal recessive limb-girdle muscular dystrophy due to desmin deficiency, LGMD2R. Tomeko brings together the specialists, research, clinical trials, treatments and community for Desmin-related myofibrillar myopathy so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:363543 · GARD 0016870
Start by learning the basics from an authoritative source, find a specialist or center that sees Desmin-related myofibrillar 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 Desmin-related myofibrillar myopathy, filtered to your area.
Tomeko shows live, recruiting studies for Desmin-related myofibrillar myopathy from ClinicalTrials.gov on the hub.