A significant part of NDF’s mission is creating awareness of and educating people about GNE Myopathy. We do this in several ways.
Our Symposia and Speaker Series serve to educate our patients, their family members, community members and industry professionals about the latest in scientific research, the progress of NDF funded studies and the many ways in which people living with GNE Myopathy can be empowered and their lives enriched.
Our Awareness and Education program also focuses on educating physicians, scientists and industry professionals, many of whom may not be aware of this disease, specifics about it, or the latest developments in potential treatments for it. This effort is intended to prevent misdiagnosis and to explain the importance of patient registries.
Additionally, we work to educate the general public about GNE Myopathy and about the importance of pre-conception genetic screening, especially in populations with higher carrier rates, allowing carriers to make educated decisions when considering family planning and to, potentially, reduce the chances of passing on the gene.