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Resources for Patients

Recently Diagnosed?

If you have been diagnosed with GNE Myopathy more commonly known as HIBM, you are likely overwhelmed and afraid. 

Fortunately, you are not alone- there are many patients like you worldwide. There are support groups, scientists, and researchers who are working diligently on treatments for GNE Myopathy. 

Currently, there are clinical trials in which you may want to consider participating in, such as those conducted by the National Institutes of Health (NIH) and Ultragenyx Pharmaceutical. In addition, many resources exist that can offer you and/or your family the support that you need.