For the first time globally, the 1st Advocacy Workshop of the Duchenne Academy was held in Greece by the UPPMD Data Foundation (United Parent Projects Muscular Dystrophy) and MDA Hellas. The Duchenne Academy took place from 8 to 10 December 2017 in a central hotel in Athens, and representatives of patients with Duchenne and members of patient organizations from Europe and the Middle East participated. The participants came from Bulgaria, the United Kingdom, Israel, Italy, Cyprus, Lebanon, Lithuania, the Netherlands, Hungary, Romania, Russia, Serbia, Slovenia, Turkey, the Czech Republic and Greece.
During the workshop, the difficulties encountered by each participating organization in their country were analysed and discussed in order to record the needs and to develop best practices to handle them, as well as creating networks of cooperation and transfer of know-how.
During the interactive portion, seminars and training were organized in support and defence of patient rights, as well as their effective representation at a national level by governmental bodies and mass media. During the training, extensive reference was made concerning the health economics related to drug development, as well as Health Technology Assessment (HTA). It was followed by a practical application with different case studies, in which the representatives applied their knowledge and the tactics they had acquired from the Academy.
At the same time, the latest developments in Duchenne Muscle Dystrophy Research Protocols and the advances in international research by representatives in the pharmaceutical industry were presented, in particular the protocols and innovations of PTC Therapeutics, Summit Pharmaceuticals, Santhera Pharmaceuticals and Sarepta Therapeutics.
MDA Hellas’ Sponsors: Lavipharm, Roche Hellas, Genesis Pharma, Pharmathen, Pfizer