Just diagnosed with Desmin-related myofibrillar myopathy?
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 interactive Desmin-related myofibrillar myopathy hub →Overview
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
Find care for Desmin-related myofibrillar myopathy
Authoritative references for Desmin-related myofibrillar myopathy
Research & market landscape for Desmin-related myofibrillar myopathy
Following Desmin-related myofibrillar myopathy for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Desmin-related myofibrillar myopathy — the real-world landscape behind the condition, in one place.
- Latest Desmin-related myofibrillar myopathy research on PubMed ↗
- Recruiting Desmin-related myofibrillar myopathy trials on ClinicalTrials.gov ↗
- Explore the Desmin-related myofibrillar myopathy 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 Desmin-related myofibrillar myopathy and every rare condition. See how Tomeko works with industry →
Common questions
What is Desmin-related myofibrillar myopathy?
Desmin-related myofibrillar myopathy is a rare condition. Also known as Autosomal recessive limb-girdle muscular dystrophy due to desmin deficiency, LGMD2R. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Desmin-related myofibrillar myopathy together in one place.
What are the symptoms of Desmin-related myofibrillar myopathy?
Symptoms of Desmin-related myofibrillar myopathy 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 Desmin-related myofibrillar myopathy.
How is Desmin-related myofibrillar myopathy treated?
Treatment for Desmin-related myofibrillar myopathy depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Desmin-related myofibrillar myopathy, and review current options with them.
What causes Desmin-related myofibrillar myopathy — is it genetic?
The cause and inheritance of Desmin-related myofibrillar myopathy are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Desmin-related myofibrillar myopathy can explain what it means for you and your family.
I was just diagnosed with Desmin-related myofibrillar myopathy — what should I do first?
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.
Where can I find a specialist for Desmin-related myofibrillar myopathy?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Desmin-related myofibrillar myopathy, filtered to your area.
Are there clinical trials for Desmin-related myofibrillar myopathy?
Tomeko shows live, recruiting studies for Desmin-related myofibrillar myopathy from ClinicalTrials.gov on the hub.
Related conditions
Other conditions on Tomeko you may be looking for: