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Patient Advocacy


NDF is the largest advocacy group for patients of GNE Myopathy and their families.  Each year, NDF hosts Symposia in cities around the world to bring patients and their families together with physicians, counselors, and scientists to discuss the disease and its impacts. 

NDF strives to create a two-way connection between 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 also about how this impacts families as well.

Our Certified Patient Advocates have worked with us to organize Patient Days in their own countries including: U.S., U.K., India, Ivory Coast and Israel. 

Click here if you are interested in learning more about our CPA Program. 

If you are interested in being updated about our upcoming events, please sign up to receive our newsletter. 

Photos from GNEM events we have hosted and/or attended:

  • Japan
  • Israel
  • India
  • Ivory Coast
    Ivory Coast
  • U.K

To see more photos from these events visit our photo gallery and our past event page.