MRC Centre for Neuromuscular Diseases 1st (1st December 2010), and 2nd (2nd May 2012) myotonic dystrophy workshops, London, UK and the myotonic dystrophy standards of care and national registry meeting, Newcastle, UK July 2011.

Over 40 clinicians, scientists, therapists and patient representatives (from the myotonic dystrophy support group (MDSG) and the Muscular Dystrophy Campaign (MDC)) took part in the workshop. The main goal of the workshops, was to establish a network of clinicians, therapists, scientists and patient organisations interested in advancing research, clinical trials and standards for care for patients with DM [1].The workshops had the following specific aims: