On 18th February 2020, Jana Popova, EAMDA EC member, attended the EURORDIS Black Pearl Awards. The event was organized to celebrate the work of decision makers, scientists, patients advocates and volunteers. This was unique opportunity to exchange experience and to establish cooperation with many important figures in the field of rare diseases. The evening ended with ceremony, which acknowledges different policy makers, scientists and patient advocates. This year Jana is the recipient of the Black Pearl Award in the category of Young Patient Advocate. EAMDA would like to congratulate the awards to all winners!
At the seaside of Slovenia coast, rehabilitation center Dva topola hosted the EAMDA 7th EC meeting between 18th and 20th October, 2019. Besides executive committee members presented, we had an honor to host respected guests from European Federation of Neurological Associations (EFNA) and World Duchenne organization, as well as we were really happy to have representatives of MDA of Romania and MDA of Turkey with us. Together were more than 35 participants coming from Romania, Ireland, Croatia, Greece, Czech Republic, Poland, Bulgaria and Slovenia. The meeting showed that there are a lot of opportunities waiting for us and that with mutual cooperation, exchanging ideas and knowledge distribution we could significantly contribute to better quality of life of people with NMD. That is what makes us all unique and stronger. We have also established a Strategic development of EAMDA activities for the next five years.