Over 1200 GNE Myopathy patients and family members worldwide are served by our support programs and resources every year.
We host an international annual symposium on GNE Myopathy , delivering education and support programs and connecting stakeholders, physicians, scientists, and researchers with community members.
We are improving the quality of life for affected individuals and their families and caretakers by facilitating social and networking events, support groups, health, nutrition, and exercise workshops, as well as practical solutions to daily struggles for those living with disabilities related to GNE Myopathy.
Our NDF Ambassador program leads the effort to promote timely genetic testing and steps to prevent passing down the disease to future generations.
Our Certified Patient Advocacy program empowers GNE Myopathy patients to self-advocate through NDF-sponsored Patient Days worldwide to reach patients unable to travel to our symposia.
We provide the latest data and resources to our international support group network, which consists of sister organizations in several countries, many of whom do not have the resources to form legal entities or access to such information