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Recently Diagnosed?

If you have been recently diagnosed with GNE Myopathy, more commonly 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.  Please see the 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. 

Patient Advocacy is at the core of everything we do at NDF

There are many ways that you can connect with other patients, worldwide.

Please consider: