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…