During September 25 and 28 EAMDA organized Annual General Meeting in Ljubljana. Friday, September 26 we were able to attend very interesting medical conference in Grand hotel Union where world-renowned lecturers presented us with great presentations on the topics significant for people with neuromuscular disorders. According to the program, Saturday, September 27 we organized workshop with a title “Living with neuromuscular disorders and its social aspects”. We would like to thank all participants for attendance and constructive discussions. Conference photos are published here.
With initiative of United Parent Project Muscular Dystrophy, EAMDA and other world wide known organizations supports activities followed by announced World Duchenne Awareness Day, 7th of September 2014. This day will be a focal point for the worldwide Duchenne Muscular Dystrophy community with the aim to bring this devastating condition to the attention of a wider global audience. More information you can find by visiting http://www.worldduchenneawarenessday.org/
We are very happy to announce that EAMDA, United Parent Projects Muscular Dystrophy and European Organisation for Rare Diseases - EURORDIS have signed joint letter on Re-examine January 2014 Negative Opinion on Conditional Approval of Ataluren (Translarna) sent to Committee for Medicinal Products for Human Use at European Medicines Agency (EMA). The common effort resulted that EMA granted Conditional Approval for Ataluren (Translarna). The full version of the letter is reachable HERE.
On 7th October, 2013, the last day of 43rd AGM, EAMDA representatives were invited to the city hall of Zagreb. The mayor of Zagreb Mr. Milan Bandic with his coworkers welcomed the delegates. The mayor said that he is an honorable member of various national organizations in Croatia similar to EAMDA and that he is especially honoured to be part of particular this one. He said that city of Zagreb is on the level of all European capitals in aspect of standards for people with disabilities.