Patient groups appeal for speedy approval of drug to treat severe rare disease. First treatment for an intractable disease called "distal myopathy" has been approved by the government.

Until now, there was no cure for this incurable disease, but after 15 years of research and development, the first drug to slow the progression of symptoms was approved, ahead of the rest of the world. In an effort to support interaction and collaboration among patients with these serious rare diseases, the Japan Council for Intractable Diseases and Illness Groups has released a website.