• Advancement of Research for Myopathies (ARM): ARM's purpose and goal is to accelerate biomedical research aimed at developing treatments for GNE Myopathy, and skeletal muscle regeneration. This group has a lab and they could send a saliva swab kit to potential patients for testing and is offering a free genetic test. They also publish newsletters for patients and other stakeholders
    Arm Newsletter
  • Neuromuscular Disease Foundation (NDF) is a nonprofit organization whose mission is to raise awareness and encourage testing for GNE Myopathy and direct funding to scientists who are working to find a treatment and cure for neuromuscular diseases, including GNE Myopathy.
  • Organization of Rare Diseases India (ORDI) was founded to address the many challenges in the management of rare disease in India.