Our first Newsletter is available here (up to now, we have only a German version):
The”Myotubular Trust” anounced their 2015 Research Grants! The “Myotubular Trust” from England has been working for many years to bring awareness to myotubular and other centronuclear myopathies and raise funds to award Research Grants.
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…
The European Medicine Agency recently granted orphan designation* to the virus containing MTM1 for the gene therapy for x-linked myotubular myopathy (XLMTM). To read more about this designation, please go to the Website of the EMA. *A status assigned to a medicine intended for use against a rare condition. The medicine must fulfil certain criteria for designation as an orphan medicine … Read more…
You can now also donate to ZNM – Zusammen Stark! e. V. via the online platform betterplace.org. Just follow the button on the right. All descriptions on betterplace are in English an German! You can use direct debit, your credit card, paypal or giropay. Thank you for your donation!
If you klick on the logo you will be recireted to the portal “gooding”. There, you can select shops for online buying. Without extra cost for you, gooding will receive a comission. A part of this comission will be forwarded to our organization ZNM – Zusammen Stark! e. V.
Audentes Therapeutics asked us to remind you about the RECENSUS Study, which was presented that the Conference in Göttingen: Until now only a few German families have registered for this study. If you are interested in participating please contact: Sabine de Chastonay, PhD (firstname.lastname@example.org).
The first “Request for Grant Application” was published today by the RYR1 Foundation to find a treatment for the centronuclear myopathie RYR-1. Congratulations!
This group in German language gives the opportunity to communicate and exchange ideas with other affected families in a protected space. This group is managed by the Association CNM – Together Strong!