As 2025 comes to an end, we would like to thank everyone in the EURO-NMD community for your commitment and support. This year has been marked by shared efforts, valuable learning and important achievements, made possible by your collaboration and dedication.

As we look ahead to 2026, we are excited to continue working together, sharing knowledge and making a positive impact. We wish you a happy, healthy and inspiring New Year!

2025 was a year marked by strong collaboration, knowledge sharing and concrete progress within the EURO-NMD network. From educational schools and interactive webinars to scientific publications, new Patient Journeys and focused workshops, many initiatives helped strengthen expertise and connections across Europe.

In this retrospective article, we look back at the key milestones of the year, highlight the people and projects behind them, and share how these achievements are shaping the future of EURO-NMD as we move into 2026.

The ERN EURO-NMD Coordination Team is delighted to announce the
9th ERN EURO-NMD Annual Meeting in the heart of Paris.

This key event will gather leading experts, clinicians, researchers and patient representatives from across Europe to share knowledge and explore the latest advances in neuromuscular disorders.

The scientific programme will cover major topics, including gene therapy, myostatin inhibition, updates from ERN EURO-NMD Working Groups, and insights from the ERN EURO-NMD Registry. A Satellite Symposium will also focus on new therapeutic horizons in immune-mediated NMDs.

👉 Join us in Paris to shape the future of neuromuscular research and care!

- Click here to view the preliminary programme
- Public registration will open in January, stay tuned!

If you’ve received a personal invitation, please use the link in your email.
For questions: annualmeeting@ern-euro-nmd.eu

📅 27 – 29 April 2026
📍 Pitié-Salpêtrière Hospital, Paris

The European Commission has published the first Monitoring Report on the European Reference Networks (ERNs), covering 24 thematic networks addressing rare, complex and low-prevalence diseases. Over the past six years, the number of new patients referred to ERN clinical centres has increased by 160%, across 1,606 healthcare providers in 375 hospitals, highlighting the strong added value of ERNs for patient care in the 27 EU Member States and Norway.

The 2025 Monitoring Report is based on data collected through regular reporting exercises and presents results per ERN, as well as country profiles with statistical overviews. The analysis relies on 24 indicators covering seven key areas of ERN activities, including coordination, training and education, registries, CPMS, and clinical decision support.

The report provides valuable insights into the impact of ERNs on patients and families living with rare diseases. EURO-NMD results are presented on page 36 of the report.

Nutrition plays a crucial role in maintaining health, mobility, and quality of life for people living with neuromuscular diseases.
Our new flyer offers a clear and practical overview of how to assess, monitor, and manage nutrition in NMDs as part of multidisciplinary care.

It highlights:

• The importance of regular nutritional assessment

• Common challenges such as chewing, swallowing, and digestion difficulties

• Personalised strategies to address undernutrition, poor appetite, or overweight

• Guidance on managing metabolic and gastrointestinal symptoms

• The value of collaboration between patients, caregivers, and care teams

📄 Download the flyer to support optimal nutritional care for individuals with NMDs!