Our four core programs each serve a unique function towards fulfilling our mission.

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Designed to find treatments and a cure

Designed to represent patients and the best interest of all stakeholders.

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Designed to increase awareness and understanding of GNE Myopathy, identify patients and carriers, and empower the community with information.

Designed to improve the lives of GNE Myopathy patients by providing physical and mental health services by experts in their respective fields.

We are committed to our patient population and cannot sit idly by to wait for a cure. By bringing patients, caregivers, doctors, and scientists together, with our programs we work to improve the lives of current GNEM patients while we actively pursue curative treatments.

Education between scientists about the disease is made possible at our Symposia, and is largely credited for creating collaboration among scientists, which in turn expedites scientific progress.