A Year of Growth and Impact
As 2024 approaches its end, we are proud to reflect on another transformative year for ERN EURO-NMD. Through the concentration of expertise and resources, and with unwavering dedication and a shared commitment to collaboration, we continue to advance our mission to improve the lives of those affected by rare neuromuscular diseases.
Webinars: A Growing Platform for Knowledge Sharing
We are pleased to see the EURO-NMD webinar series flourish and grow from year to year. This ongoing success can be attributed to the dedication of our expert speakers and the active engagement of our participants. Thanks to this, the webinars have become the keystone of our knowledge-sharing initiatives.
Key Figures for 2024
- 30 webinars delivered
- 34 speakers sharing their expertise
- 5 webinar series hosted
- 3,250 registrations received
- 2,000 participants actively engaged
We would like to express our sincere gratitude to the vibrant community that supports these events, and we are optimistic about achieving even greater success in 2025!
Key Achievements for the EURO-NMD Registry in 2024
This year marked a significant milestone with the launch of the first unified registry for rare neuromuscular diseases in Europe.
The registry integrates a Central Registry with a FAIR-compliant federated infrastructure, enabling seamless data sharing and joint analyses across multiple sources. By consolidating standardised data from across the network into an interoperable system that connects with existing resources, the EURO-NMD Registry lays a foundation for:
- Improving clinical care and aligning practices across Europe
- Enabling large-scale, cross-border research to drive progress in both clinical knowledge and therapeutic advances
Onboarding Progress
- 7 sites successfully onboarded, close to our year 1 target of 10 healthcare centres.
- 25 patients enrolled so far, paving the way for the long-term goals of participation and data collection.
This initiative represents a transformative step forward in addressing the challenges of rare neuromuscular diseases on a European scale.
More info on the Registry project here!
Summer Schools: Advancing Education and Collaboration
Since the establishment of the EURO-NMD network in 2017, EURO-NMD has organised the annual Neuromuscular Translational Summer School in partnership with TREAT-NMD, with the last editions accredited by the European Accreditation Council for Continuing Medical Education (EACCME).
Building on this success, EURO-NMD launched a new Summer School on Multidisciplinary Care in 2023. Its inaugural edition in Rome was accredited with 21 European CME credits.
In 2024, EURO-NMD organised:
6th Neuromuscular Translational Summer School
In partnership with TREAT-NMD, this program focused on therapy development from bench to bedside, with lectures and workshops on drug development, outcome measures, biomarkers, and patient involvement. Participants also honed their skills in communicating research effectively to both patients and the public.
Key Figures for 2024
- 18 students
- 12 Faculty members
- 3 Days of lectures
- 2 Industry members
- 1 European accreditation
2nd edition of the Summer School Care: Multidisciplinary Management of Neuromuscular Diseases
Co-organized with Filnemus, this program brought together experts to explore the latest advancements in multidisciplinary care. Through interactive sessions, attendees gained valuable insights into diagnosis, treatment, and care coordination, strengthening the field’s collaborative approach.
Key Figures for 2024:
- 29 students
- 21 Faculty members
- 3 Days of lectures
- 1 European accreditation
More info of our Summer Schools here!
Patient Journeys: Collaborative Successes
This year, clinicians and patients worked together to develop three new Patient Journeys, providing detailed insights and practical guidance for managing specific neuromuscular diseases:
- Myasthenia Gravis
- Myofibrillar Myopathy
- Multifocal Motor Neuropathy
Looking ahead, we are excited to expand this initiative in 2025 with journeys for Myositis, ALS, and Mitochondrial Myopathies.
More info on our Patient Journeys here!
As we celebrate the successes of 2024, we remain inspired by the collective effort of our network and community. Together, we continue to push boundaries and lead the way in improving care and outcomes for all.
We wish you a brilliant and impactful 2025!