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. There are many organizations, and patients support groups that offer appropriate assistance. Please see the list of resources for groups and organizations that may be helpful to you.
Currently, there are clinical trials in which you may want to consider participating, 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.