Newsletter published

Ab jetzt kann der aktuelle Newsletter, die Ausgabe 3 von 2017, von unserer Seite heruntergeladen werden! Wir berichten über die vielen Aktivitäten im Verein, von unserer Familienkonferenz, von den neuesten Ergebnissen aus der Forschung und wie wir dank unserer Spenderinnen und Spender zum ersten Mal einen wesentlichen Beitrag zur Forschung leisten konnten! Und natürlich stellen … Read more…

Family Meeting 2017

The Annual General Meeting and Family Conference of the association CNM – Together Strong! e.V. will take place from May, 5th to 7th in Tambach, Thuringia-Germany. This time, the conference will be only in German language. Here you can find information about the program and application form. We are looking forward to seeing you again! … 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…

EMA grants orphan designation to MTM-Treatment

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…