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What is GNE Myopathy / HIBM?

What if You Have Been Recently Diagnosed?

If you have been recently diagnosed with GNE Myopathy, also known as HIBM, you may be overwhelmed and afraid; but fortunately you are not alone.  NDF is the world's largest organization focused on GNE Myopathy and we are here for you.  Please see our list of resources for other groups and organizations that may also be helpful to you in different parts of the world. 

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