Support for Patients of GNE Myopathy (GNEM) and Their Families

We are the largest advocacy group for patients of GNE Myopathy (GNEM) / HIBM and their families. We strive to create a two-way connection between GNE Myopathy (GNEM) / HIBM patients and scientists in order to maximize patient understanding about the latest research and treatment options being developed; and for physicians, scientists, and pharmaceutical companies to gain a better perspective, not only about patients’ needs and experiences, but about how this rare neuromuscular disease and its ongoing research impacts families as well.

Bi-Monthly Meetings

NDF organizes bi-monthly meetings featuring patient advocates, scientists and experts in many fields of interest presenting to our patients, which has served to maintain critical discourse among scientists, educate the patient community and actually expanded our reach.  Our online video library of GNEM resources and information has created an invaluable resource for people who are interested to view these events, on demand.

Our Certified Patient Advocate Program empowers GNE Myopathy (GNEM) / HIBM patients worldwide to work as our partners in advocating for and creating programming in their home countries.  We currently work with CPAs in U.S., U.K., India, Israel, Turkey, France, Italy, Greece, Germany, Ivory Coast, Pakistan, Korea, China, Taiwan, Saudi Arabia, and Canada.  Click here to learn more or to get in touch with one of our CPAs.