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Programs

Patient & Carrier Advocacy

 

NDF is the largest advocacy group for patients of GNE Myopathy and their families.  Each year, NDF hosts Patient Day Symposia in New York and Los Angeles to bring patients and their families together with physicians, counselors, and scientists from around the United States and abroad 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.

Below pictures are from our  most recent Patients' Day Symposium in Los Angeles, California