2025 was an exciting and productive year for EURO-NMD. Our network continued to grow, strengthen partnerships, and provide support to healthcare professionals and patients across Europe. From educational initiatives to innovative projects, the year has shown how collaboration and shared expertise can make a real difference. Here’s a look back at some of the highlights.
Working Groups: Advancing care through shared knowledge
In 2025, EURO-NMD Working Groups continued to play a key role in shaping the network’s activities. Through close collaboration between experts from different countries, these groups supported clinical reflection, knowledge sharing and the development of concrete outputs that respond to real needs in the field.
A strong focus was placed on transition from childhood to adulthood, a critical period for patients with neuromuscular disorders. This work led to the publication of the scientific article “Transition from childhood to adulthood in neuromuscular disorders: results from the ERN EURO-NMD survey”: https://pubmed.ncbi.nlm.nih.gov/41366457/
The study is based on a cross-sectional survey conducted by ERN EURO-NMD, aiming to assess current transition practices among European healthcare providers (HCPs). The results provide a valuable overview of existing approaches, challenges and gaps, and highlight the need for more structured and harmonised transition pathways across Europe.
In parallel, an Inter-ERN Transition Group was established, bringing together several European Reference Networks to exchange experiences and align efforts beyond disease-specific boundaries. This joint initiative reflects a shared commitment to improving continuity of care for young people living with rare diseases.
Webinars: Sharing knowledge across borders
In 2025, EURO-NMD continued to invest strongly in its webinar programme, recognising the importance of accessible and flexible learning opportunities for healthcare professionals. The webinars offered a space to share expertise, discuss clinical challenges and present updates on research and care pathways in rare neuromuscular diseases.
Covering a wide range of topics, the sessions brought together speakers from different countries and disciplines, encouraging diverse perspectives and rich discussions. The interactive format, with live questions and exchanges, allowed participants to directly engage with experts and reflect on how new knowledge could be applied in their daily practice.
Key figures 2025:
- 38 webinars held throughout the year
- 6 webinar series
- Broad participation from many countries
- Strong interaction through Q&A and post-event resources
Webinars proved to be an effective way to learn, connect, and exchange ideas regardless of location.
Educational Schools: Hands-on learning for professionals
EURO-NMD continued to support training and knowledge sharing through its Educational Schools. These schools are designed to help healthcare professionals improve their skills while learning directly from experienced experts in the field of rare neuromuscular diseases.
Two Educational Schools were organised in Marseille (France) and Leiden (The Netherlands). Each event brought together young clinicians from different European countries and a group of expert trainers. The programmes focused on real clinical cases, practical discussions and open exchanges, helping participants better understand daily challenges in patient care.
The Educational Schools also created a friendly and collaborative learning environment. Participants were able to meet peers, share experiences and build professional connections that often continue beyond the event:
- 2nd edition of the Summer School on Multidisciplinary Management of Neuromuscular Diseases
- 7th Neuromuscular Translational Training School
Key figures 2025:
- Two schools delivered
- International faculty and participants
- Active networking and skill-building
- Both schools have been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®)
Participants appreciated the hands-on approach and opportunities to learn directly from experts in the field.
EURO-NMD Registry onboarding progress
Following the successful onboarding of seven centres in 2024, the EURO-NMD Registry continued to grow in 2025. By December 2025, 19 healthcare providers had completed all the necessary contractual, ethical and technical steps, and were authorised to enrol patients and enter clinical data into the registry.
To date, the Registry contains data on 383 patients, with 12 centres having already made substantial contributions. Notably, Dublin has enrolled over 100 patients, demonstrating that achieving significant scale is possible.
Participation now extends across 12 European countries, reflecting strong engagement and growing momentum towards establishing a unified European clinical registry for neuromuscular diseases. Several additional healthcare professionals (HCPs) are currently finalising their activation and are expected to complete the onboarding process in early 2026.
We warmly encourage all remaining EURO-NMD HCPs to begin or finalise their onboarding process. The Coordination Team is available to support you at every step.
For assistance or to initiate the process, please email: registryhelpdesk.euronmd@outlook.com
Patient Journeys: Keeping patients at the centre
Patient Journeys remained a cornerstone of EURO-NMD’s patient-centred approach in 2025. Building on previous work, the network completed the development of three new Patient Journeys focusing on Myositis, Amyotrophic Lateral Sclerosis (ALS), and Mitochondrial Myopathies.
These Patient Journeys aim to clearly describe each step of the care pathway, from first symptoms and diagnosis to long-term follow-up, while identifying common challenges, unmet needs and good practices. They are designed not only as informative tools, but also as practical references to support dialogue between patients, healthcare professionals and policymakers.
The three Patient Journeys will be officially released in early 2026. In parallel, EURO-NMD prepared a scientific publication detailing the methodology used to develop Patient Journeys, with the objective of sharing this structured approach with other networks and initiatives across Europe.
Annual Meeting in Essen: A hub of ideas
Our Annual Meeting in Essen was a true highlight. Members, experts, and stakeholders came The EURO-NMD Annual Meeting 2025, held in Essen, was one of the key moments of the year. Bringing together network members, experts and stakeholders, the meeting offered a valuable opportunity to reflect on achievements, discuss ongoing projects and define priorities for the future.
Scientific sessions, strategic discussions and interactive exchanges created a dynamic environment where ideas could be openly shared. Beyond the formal agenda, the meeting also played an important role in reinforcing personal connections and trust between participants, which are essential for effective collaboration within a European network.
The strong attendance and active participation highlighted the continued commitment of the EURO-NMD community to working together towards improved care for patients with rare neuromuscular diseases.
Stay tuned for the upcoming Annual Meeting in Paris in 2026!
Collaborations with other European projects
EURO-NMD further strengthened its collaboration with other European projects, notably ERDERA and JARDIN. These partnerships reflect a shared ambition to align efforts, pool expertise and maximise impact across Europe.
Through regular exchanges and joint reflections, these collaborations helped identify synergies between projects, avoid duplication of work and promote coherent approaches to rare disease research, care and policy. Working alongside other European initiatives also allowed EURO-NMD to position neuromuscular diseases within broader rare disease strategies, ensuring that patient needs are addressed in a coordinated and sustainable way.
First EURO-NMD Workshop: ATTRv Neuropathies Treatments
A major highlight of 2025 was the organisation of the first EURO-NMD Workshop, dedicated to ATTRv Neuropathies Treatments. This focused event created a space for in-depth discussion on therapeutic strategies, emerging evidence and real-world clinical experience.
Unlike larger conferences, the workshop format encouraged open dialogue and detailed exchanges between experts, fostering meaningful discussions on complex clinical questions. Participants had the opportunity to share experiences, compare practices and explore future directions in the management of ATTRv neuropathies.
The very positive feedback received confirmed the value of targeted, topic-specific workshops, and opened the door to similar initiatives in the future.
Looking Ahead to 2026
Looking back, 2025 was a year full of progress, collaboration, and innovation. As we move into 2026, EURO-NMD is ready to build on these achievements, expand our educational and clinical initiatives, and continue improving care and support for people living with rare neuromuscular diseases across Europe. Together, we are shaping a stronger, more connected future.