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. Each year, we host Symposia in cities around the world to bring GNEM patients and their families together with physicians, counselors, and scientists to discuss this rare disease and its impacts.

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. Our events also create unparalleled opportunities for scientific collaboration. To see photos from these events, visit our photo gallery

How NDF adapted to the COVID-19 pandemic

In 2020, in response to the COVID-19 pandemic, NDF quickly reinvented its in-person Symposia to a weekly, online Symposium Speaker Series featuring 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 2021 Speaker Series will be kicked off this summer and we expect will have an even greater reach and benefit.

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.

In our effort to consider the wholistic needs of our patients, we have mental wellness programs in place which include our Emotional Wellness Clinic and various support groups for the entire GNE Myopathy community. In these groups, patients and family members can meet people with similar experiences, learn about their disease, discuss GNE Myopathy symptoms, neuromuscular disease treatments, and more. To get in touch with our Emotional Wellness Director, click here and learn more about our support groups here.”