Second Birthday and EURORDIS Summer School

 

Exactly two years ago, on June 05. 2015, ZNM – Zusammen Stark! e. V. was founded at the first family conference in Göttingen by people with CNM and their parents. Within this short time we have achieved quite a lot. A summary of the first year (till 2016) can be found on the post of the first birthday. Since then, more individuals and families have found us. Thus, today, ZNM – Zusammen Stark” represents 41 families with 123 people from Germany and the Netherlands. Our small association was able to transfer 45,000 €  to the research grants of the Myotubular Trust. The last check was issued at our members’ meeting one month ago in Tambach. This all was made possible by the support of our donors and  these many creative ideas of our members to raise money! Thank you so much!

On our YouTubeChannel,  ZNM- Zusammen Stark! has now also published videos in Spanish, Italian, and Polish!
This (and much more) can be found in the  yearly report of the management board [only in German]. Many of our members  met one month ago at  the family conference in Tambach. Reports and images can be found here.

Today is also the start of the Eurordis Summer School in Barcelona. We are very happy that again a member of ZNM – Zusammen Stark can participate. In this way, we all will learn more on Clinical Trials Methology and Clinical research, ethical considerations in medicines development, regulatory affairs and more. Thanks to EURODIS for this opportunity and thank you to our member Arlene Wüstner for her participation and commitment-

Together we are strong!

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