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Severe congenital nemaline myopathy

Just diagnosed with Severe congenital nemaline myopathy?

You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Severe congenital nemaline myopathy, look for clinical trials, and connect with others living with it — all in one place.

Open the full Severe congenital nemaline myopathy hub →

Overview

Severe congenital nemaline myopathy is a rare condition. Tomeko brings together the specialists, research, clinical trials, treatments and community for Severe congenital nemaline myopathy so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.

Identifiers: ORPHA:171430 · OMIM 161800, 256030, 615348 · ICD-10 G71.2 · GARD 0012821

Find care for Severe congenital nemaline myopathy

Authoritative references for Severe congenital nemaline myopathy

Common questions

I was just diagnosed with Severe congenital nemaline myopathy — what should I do first?

Start by learning the basics from an authoritative source, find a specialist or center that sees Severe congenital nemaline myopathy, and connect with a patient organization. Tomeko brings these together on one hub.

Where can I find a specialist for Severe congenital nemaline myopathy?

Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Severe congenital nemaline myopathy, filtered to your area.

Are there clinical trials for Severe congenital nemaline myopathy?

Tomeko shows live, recruiting studies for Severe congenital nemaline myopathy from ClinicalTrials.gov on the hub.

Informational only — not medical advice. Always consult a qualified clinician. Provider and reference data from public sources (NIH GARD, Orphanet, OMIM, HPO, MONDO, ClinicalTrials.gov, CMS NPPES). © Tomeko · tomekohealth.com