On October 25- 26, EAMDA hosted the “Advancing Together: Shaping a Brighter Future for NMD Patients” Workshop in Ljubljana, Slovenia—a capacity-building event, dedicated to our member organizations. We brought together patients, patient representatives, pharma partners, and other interested stakeholders for two days of insightful presentations and discussions covering essential topics, including diagnostic and newborn screening, care of NMD patients, research and clinical trials.

Participants also had a unique opportunity to deepen their understanding of Euro-NMD ERN and the extensive range of activities it offers. There is still a significant need for increased involvement from patient representatives, especially from Eastern Europe, to strengthen this vital network.

As part of our capacity-building focus, we introduced various training opportunities for attendees, such as EUPATI training, Eurordis Open Academy, EFNA E-learning modules and the EPF Master’s Program. A national best practice model from APO – Czech Republic Academy for Patient Organizations was also presented, as a very good example of patient empowerment, which can be replicated in other countries.

Our workshop also included valuable sessions on patient empowerment and essential guidelines for collaborating with pharmaceutical companies.

We extend our deepest gratitude to our sponsors, Roche, Biogen and Alexion Pharmaceuticals, Inc., for their continuous support. Their commitment helps drive our shared mission forward, enabling us to create impactful learning and advocacy opportunities for the NMD community.

Let’s continue to stand together and shape a brighter future for NMD patients in Europe and beyond!