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 hibm.org/
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. http://ordindia.org