Donation to the Myotubular Trust

At our membership meeting on May 6 we have decided to donate € 10,000 to the Myotubular Trust, that you so kindly donated to us. This sum will be added to the money that is available for research grants for finding a cure for myotubular myopathy and other centronuclear myopathies in this year’s call. Contributing … Read more…

Film of the Myotubular Trust with German Subtitles

Here is the great film of the Myotubular Trust with German subtitles. It shows, that sponsoring research for a treatment for centronuclear myopathies in deed pays off. All this the Myotubular Trust made possible with donations! Thank you so much Myotubular Trust and donors! We co-operate closely together with our friends of the Myotubular Trust … Read more…

European Conference

On May 07. and 08., 2016 the European family conference on myotubular myopathy and other centronuclear myopathies takes place in Niedernhausen near Frankfurt, Germany. It is organized together by the Myotubular Trust and ZNM – Zusammen Stark! Information on the conference, the detailed program (incl workshops) and to the registration process you will find here.  … Read more…

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…