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!

The Big Sunflower Projekt 2016

The Big Sunflower Project initiated by Toni Abram of the Information Point for Centronuclear and Myotubular Myopathy aims to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy by asking people to grow a sunflower. The project has given away sunflower seeds since 2011 and this raises awareness of centronuclear and myotubular myopathy … Read more…

ZNM – member of the Eurordis alliance

Since November 2015  ZNM – Zusammen Stark! e. V. is member of the EURORDIS alliance. “EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 695 rare disease patient organisations in 63 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.” (http://www.eurordis.org/about-eurordis) We are very pleased  to be now … Read more…