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[BLOG] 47th Annual General Assembly of EAMDA

An inspirational experience for people with Neuromuscular disease.

The European Alliance of Neuromuscular Disorders Associations (EAMDA) held its 2019 Annual General Assembly in Prague on 20-23 September. The event gathered more than 120 participants from several European countries, including Slovenia, Croatia, Serbia, Poland, Czech Republic, Slovakia, Bulgaria, Turkey, Italy, France and Switzerland. The event had three main parts: a medical, a social and an administrative one (for EAMDA Executive Committee members only). All sections provided useful information and an incredible opportunity for international cooperation. 

The conference kicked off with a highly professional medical programme, split into four sections, where medical experts from all over Europe presented new medical treatments and clinical trials for people with neuromuscular disease (NMD). Sessions included topics on “Diagnosis and new therapies in neuromuscular disorders”, “New clinical trials and approach in NMD”, “Cardiological and respiratory care” and “Restorative rehabilitation and treatment”.

Important highlights of the medical programme included the lectures of Dr. Gordana Kovacevic and Dr. Libuse Smolikova. Dr. Kovacevic showed examples how the role of symptomatic therapy has changed in the era of new therapeutic opportunities, while Dr. Smolikova presented the most important components for effective respiratory physiotherapy for patients with NMD. The presentations gave valuable indications on how the treatment for neuromuscular disorders can be improved. There were also several lectures, focusing on the equal access to healthcare and different results from new medical treatments. The medical part of the conference can be summed up by the fact that patient engagement is significant in modern society and medical experts should take this into consideration.

The second day was dedicated to the social program. It included many interesting lectures from representatives of different European patients’ organizations. Alexandre Mejat from EURORDIS gave a great lecture on the structure of the organisation and its activities for patients with rare disorders. Michal Rataj, EAMDA Executive Committee member and EPF Board member, made a brilliant presentation on patient engagement at the European Patients’ Forum and the European Medicines Agency. He focused on the influential voice of EPF among different patients’ communities and talked about the latest activities of the organisation, including the successful Summer Training Course for Young Patient Advocates. The course was recognised as a great initiative and received positive reactions from all conference participants.

As a member of the EAMDA Executive Committee and of the EPF Youth Group, I also was invited to do a presentation. It focused on the media coverage of people with NMD in my home country - Bulgaria. Another highlight of the social program was the organisation of a round table on experiences in implementing new medical treatments for neuromuscular disorders in Europe. All participants agreed that nowadays times are very challenging, especially because European countries still have to find a way on how to finance expensive drugs for NMD. EAMDA believes that the best solution to the current situation can be achieved only if a dialogue between all participants (pharmaceutical industry, medical experts and patients with neuromuscular disorders) was to be created.

What’s next?

The 47th EAMDA Annual General Assembly came to a successful end, reaching the conclusion that the organisation plays a significant role in global society and it improves social policy for people with NMD on both local and international levels. Besides, EAMDA appreciates its close cooperation with other European patients’ organisations and it is ready to develop the collaboration on mutual projects.

Jana Popova, member of the EAMDA Executive Committee and EPF Youth Group