GNEM is a distal myopathy; a very rare, genetic condition that causes gradual progressive muscle weakness
It is also known as hereditary inclusion body myopathy (HIBM), quadriceps-sparing myopathy (QSM), distal myopathy with rimmed vacuoles (DMRV), Nonaka myopathy or hereditary inclusion body myopathy type 2.
How rare is it?
It is a very rare condition. The worldwide prevalence of GNE myopathy is estimated to be one person in a million.
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