News

24 February 2017: Jocelyn Laporte’s team at the Institute of Genetics and Molecular and Cellular Biology (IGBMC) have identified and characterised a new gene implicated in centronuclear myopathy; CACNA1S. This important breakthrough could uncover new potential research avenues, as well as giving hope to families who currently do not have a genetic diagnosis. Further details are available on the IGBMC website.

15 December 2016: Read our first MTM and CNM Registry Biannual Newsletter (Edition 1, December 2016)

25 November 2016: Are you protecting your personal data and being a ‘smart’ research participant? Read our Tips on safe data sharing to find out.

31 October 2016: Audentes Therapeutics publish a set of Frequently Asked Questions for the patient community on AT132 (their gene therapy product for X-Linked Myotubular Myopathy)