GNE Myopathy patient organizations

Founded in 2000, Advancement of Research for Myopathies, a 501©(3) non-profit, has helped transform the landscape for the orphan/rare disease known as Hereditary Inclusion Body Myopathy (HIBM); a progressive and debilitating muscle wasting disorder caused by a gene defect. It touches those between 20 to 40 and, although progression is slow, it can lead a patient to quadriplegic state.

Through encouraging researchers to study this rare disease, and ultimately find a cure, ARM has greatly accelerated HIBM research and has been a vital role in gaining worldwide scientific interest in HIBM. By expanding awareness in the public and scientific community, raising funds for research, funding research projects around the world, and creating its own accredited non-profit molecular laboratory in 2002, HIBM Research Group (HRG), ARM & HRG has created and shared significant and crucial HIBM bio-materials. Because of these efforts, today HIBM has arrived to human trial stage for potential HIBM treatments. Only with your help can ARM continue its efforts to cure this debilitating condition.

We are an international group of GNE myopathy patients, family and friends, with the mission to generate awareness among patients and communities worldwide about this rare genetic disorder, and to provide information and support to patients. We are located in many countries including Asia, Europe, Middle East, and United States of America.

We have set up a website to raise awareness of our disease

Muscular Dystrophy UK has funded high quality research into neuromuscular disorders for the last 50 years. They provide free care and support for babies, children and adults affected by muscle disease, fund world-class research to find treatments and cures, provide grants towards equipment and campaign to raise awareness and bring about change.

The Neuromuscular Disease Foundation (NDF), is a nonprofit organization dedicated to raising awareness and encouraging screening for NMD and to direct funding to scientists who are working to find a treatment and cure for neuromuscular diseases, including GNE Myopathy/HIBM. NDF is a world leader in funding and support for GNE. NDF has the unique ability to promote collaboration within the scientific community in search of treatment and cures for NMD.

Patients Association for Distal Myopathies began in 2008 and provides much needed to support to those people in Japan affected by distal myopathies.

They actively promote and encourage the development of new drugs through scientific research. They also inform their members of the latest news in the field and strive to raise the awareness of distal myopathies amongst the general public.