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The 8th ERN EURO-NMD Annual Meeting took place on March 5-7, 2025, at Essen University Hospital, Germany. This year, we focused on two key themes: Newborn Screening and Transition. These critical topics guided our discussions, emphasizing the importance of early detection of neuromuscular diseases and the smooth transition of care from pediatric to adult services. Newborn Screening – How can early detection change the lives of patients and families? We explored advances in screening techniques and early interventions.
Transition – Ensuring continuity of care is essential. We discussed best practices to support young patients moving from pediatric to adult healthcare services. Beyond presentations and discussions, this meeting was about collaboration, knowledge-sharing, and strengthening our community. Together, we strive to enhance care and improve outcomes for those affected by neuromuscular diseases.
Click here to see the slides that were presented during our Annual Meeting.
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We are delighted to announce the second edition of the Summer School, co-organized by the European Reference Network for rare neuromuscular diseases (ERN EURO-NMD) and the French network of expertise on NMDs (FILNEMUS). Taking place from 24-27 September 2025, this Summer School will cover essential aspects of care, extending beyond the neuromuscular sphere. The program will include a wide range of topics to support healthcare professionals in addressing the diverse challenges of neuromuscular diseases (NMDs).
Key topics: - Extramuscular involvement: cardiac, endocrinological, gastrointestinal, skin and respiratory systems
- Dysautonomia, central nervous system disorders and epilepsies
- Rehabilitation
- Palliative care
- Psychological impact of NMDs
- Management of relationships and sexuality
- Management of pregnancy
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We are pleased to announce that the Patient Journey on Myasthenia Gravis has now been translated into Lithuanian and Dutch, expanding access to this essential resource for patients and healthcare professionals alike. The Patient Journey is designed to provide valuable insights into the experience of individuals living with Myasthenia Gravis, offering guidance on diagnosis, treatment options, and day-to-day management of the disease. By making this resource available in multiple languages, we hope to support a wider range of patients and healthcare providers across Europe, ensuring that the journey of those affected by Myasthenia Gravis is understood and managed with greater ease and knowledge. We encourage you to share these newly translated versions with your networks to further enhance understanding and improve care for Myasthenia Gravis patients. Stay tuned for more updates and additional language translations in the future!
Clicke here to discover the Patient Journeys!
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Dear user of the CPMS 2.0, With the migration of all data from the old CPMS to CPMS 2.0, and after the successful decommissioning of the old system, CPMS 2.0 is now the platform for cross-border medical discussions. If you had previously used the old CPMS, you don’t need to request access to CPMS 2.0. Your user account has been migrated, and you should have the same access rights in CPMS 2.0. If not enrolling is The CPMS 2.0 can only be accessed via the two links below. Please bookmark the appropriate one. There is plenty of documentation available and regular training sessions are organised.
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The ERN EURO-NMD Working Group on Peripheral Nerve Diseases is pleased to present a Webinar series dedicated to Dysimmune and inflammatory neuropathies. This seven-episode series brings together clinicians, researchers, and patients to discuss a range of neuropathies and address key topics, including (but not limited to) challenges in diagnosis, advances in treatment, guidelines, emerging biomarkers, electrodiagnostic patterns, and the role of imaging in clinical practice.
Next episode:
Episode 6: Thursday, 20 March 2025
Time: 16:00 - 17:00
Topic: Peripheral Nerve Imaging with Focus on Inflammatory Neuropathies
- “Ultrasound Use” by Nens van Alfen (Radboud University Medical Center, Nijmegen, the Netherlands)
- “Magnetic Resonance Neurography” by Stephan Goedee (University Medical Center, Utrecht, the Netherlands)
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If you missed a webinar, don't panic! All our webinars are recorded and made available on our website. |
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We are excited to welcome you to Pisa for this important event, where top scientists from around the world will share the latest discoveries in ALS (Amyotrophic Lateral Sclerosis) and other motor neuron diseases (MND). This meeting will focus on how artificial intelligence and digital health can improve care and treatment for neuromuscular disorders. The ALS Pisa Meeting will offer two days of inspiring talks and great opportunities for networking with experts in the MND community. Join us to learn how new technology can help us understand and treat these diseases better.
21 – 22 March 2025
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PNS Annual Meeting: The global hub for Peripheral Nerve Research
The Peripheral Nerve Society (PNS) unites scientists, physicians, and healthcare providers worldwide to improve understanding and treatment of peripheral nerve diseases.
The PNS Annual Meeting is the largest event dedicated to peripheral nerve research, offering opportunities to learn about the latest developments and connect with experts. Thanks to sponsor support, the program includes focused sessions led by groups like the CMTR, INC, IDNC, NPC, and TTNC, highlighting important progress in the field.
🗓️ 17 – 20 May 2025
📍 Edinburgh
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Join leading neurologists, researchers, and healthcare professionals in Helsinki, Finland, for the 11th Congress of the European Academy of Neurology (EAN). This premier event will feature pioneering research, plenary lectures, and interactive workshops, covering a wide range of topics, including neurodegenerative diseases, stroke, epilepsy, and multiple sclerosis. Helsinki’s vibrant culture and stunning surroundings provide the perfect backdrop for networking and knowledge exchange. Don’t miss this essential event for advancing neurology and improving patient care. 📅 Dates: June 21–24, 2025
📍 Location: Helsinki, Finland Stay tuned for registration details on the official EAN Congress website!
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The Public Health Committee of the European Parliament has launched a public consultation on rare diseases. This is an important opportunity to make our voices heard and highlight the need to support and fund the European Reference Networks (ERNs).The consultation is open until the end of March. We encourage you to take part and share it widely. |
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Join a world-class team led by Patrick Chinnery and Rita Horvath dedicated to mitochondrial diseases research. The job offers are for one Clinical Research Associate, one Post-Doctoral Clinical Research Associate and a Junior Clinical Research Coordinator.
For informal inquiries, please get in touch with Patrick Chinnery (pfc25@cam.ac.uk), Rita Horvath (rh732@cam.ac.uk), Jelle van den Ameele (jv361@cam.ac.uk) or the MitoCamb research team (hb292@cam.ac.uk).
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