If you’ve never heard the term “GNE Myopathy,” or “GNEM” before, you aren’t alone. For decades, this very rare disease that exists in races and nationalities worldwide, and has elevated carrier rates in certain populations of the Middle East, Eastern Europe and Asia, has wreaked absolute havoc in the lives of its patients, while going largely unknown to the rest of the world’s unaffected population (including genetic carriers).

GNEM is what’s known as an autosomal recessive genetic disease. It’s a late-onset condition that typically presents in patients’ late twenties, and manifests through difficult-to-diagnose symptoms such as “foot drop” (difficulty lifting the front part of the foot. If you have foot drop, the front of your foot might drag on the ground when you walk), that disrupt patients’ ordinary daily activities, such as jogging or climbing stairs.

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