Family Conference – Save-the-Date – May 7

  ZNM – Zusammen Stark! e. V. and the Myotubular Trust wil host the next family conference on myotubular myopathy and other centronuclear myopathies on May 07 in Germany near Frankfurt. More information you will find soon on our website: Family conference 2016. We hope that many of you can come!

Visit to Strassbourg

Today, October 21, Emil was invited to the IGBMC (Institut de génétique et de biologie moléculaire et cellulaire. We got to know the research group of Jocelyne Laporte and Johann Böhm and  explained how life is with myotubular myopathy. Holger reports about a normal day in Emil’s life       Most of those present … Read more…