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Share your experience: Help shape the European ALS Care Pathway The ALS Care Pathway Working Group, part of the ERN EURO-NMD and the JARDIN Joint Action (Task 6.2), is developing a European care pathway for Amyotrophic Lateral Sclerosis (ALS). We invite people living with ALS and their carers across Europe to complete an online questionnaire to share their experiences. Your feedback will help: - Identify gaps in care, support and coordination
- Capture unmet needs that may not currently be addressed in existing resources or guidelines
- Better understand the real-life experiences of patients and carers
These insights will guide the development of a harmonised European ALS care pathway, aiming to improve care across countries and reduce disparities. Who can participate? - People living with ALS
- Carers and family members supporting someone with ALS We are aiming to reach participants from as many European countries as possible, including countries that are currently underrepresented in international studies.
The questionnaire will remain open until: Thursday 30 April 2026
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The ERN EURO-NMD Coordination Team is excited to announce that the 9th ERN EURO-NMD Annual Meeting will take place in the historic Pitié-Salpêtrière Hospital in the heart of Paris 27 - 29 April 2026. This annual gathering brings together leading experts, clinicians, researchers, and patient representatives from across Europe to exchange knowledge and discuss the latest developments in neuromuscular disorders.
Discover our Programme here!
Propose a Case for Discussion
On Wednesday, April 29th, 2026, from 09:30 to 10:30, a session on Case Reports will be chaired by Tanya Stojkovic and Elena Pegoraro. Three cases will be presented (15 min + 5 min discussion each). To submit a case: Upload the case in CPMS 2.0 Obtain the case nickname / Patient ID on CPMS Complete the form: Case discussion during 2026 EURO-NMD Annual Meeting – case uploaded to CPMS
Note: If more than three cases are submitted, the chairs will select three; remaining cases will be presented during EURO-NMD Grand Rounds. For questions regarding the session, contact a.atalaia@ern-euro-nmd.eu. Join us in Paris to shape the future of neuromuscular research and care!
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EURO-NMD Registry: Growing Participation Across Europe The EURO-NMD Registry, launched to support research and improve care in neuromuscular diseases, is gaining momentum. Despite the complexity of implementation, participation is steadily increasing, with 641 patients enrolled across 12 countries, demonstrating growing engagement within the EURO-NMD network and progress towards establishing a truly pan-European clinical registry.
Looking ahead, several developments will further strengthen the registry, including expansion beyond ERN centres, integration of patient-reported outcomes, and deployment of the EURO-NMD Registry Hub to support joint analysis with fragmented data sources enhancing the potential for cross-border research.
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ERN EURO-NMD invites its Healthcare Providers to apply for the 2026 On-site Muscle and Nerve Imaging Training Programme. Applications are open until 31 March 2026 (23:59 CET), with selected centres announced in April and visits starting from May 2026. The programme offers a 1–2 day tailored on-site training delivered by expert neuromuscular MRI specialists. Sessions will focus on optimising imaging protocols, improving interpretation skills, discussing complex cases, and strengthening the integration of MRI into clinical practice and research. This initiative aims to enhance local expertise, harmonise practices across the network, and support the development of high-quality neuromuscular MRI services.
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[EXTENDED DEADLINE - 30 March 2026]
The European Reference Network on Neuromuscular Diseases (ERN EURO‑NMD) is conducting a Europe‑wide anonymous survey to better understand how young people with neuromuscular diseases (NMD) experience the transition from paediatric to adult care. We want to hear your experiences – what worked, what was challenging, and what could be improved. Your input will help identify current practices, challenges, and opportunities for better care across Europe, and help make your voices heard. If you are aged 12–25 and have transitioned—or are transitioning—from paediatric to adult care, or if you are a parent, we invite you to participate. If you are older, but would like to share your experiences, we welcome your input as well. The survey takes about 15 minutes to complete and is open until 8 March 2026. The survey is available in several languages. Although translated carefully, some terms may not fully match local healthcare contexts. In that case, please use the option “other” to explain your situation.
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EURO-NMD invites clinicians to the Fourth CPMS Day on 08 April 2026, 18:00 CET, focusing on Neuromuscular Junction Defects. This session offers the opportunity to present challenging cases and receive expert feedback via the CPMS platform. Moderators: - Hanns Lochmuller, Universitätsklinikum Freiburg & Children’s Hospital of Eastern Ontario Research Institute, Canada
- Lorenzo Maggi, Fondazione IRCCS Istituto Neurologico Carlo Besta, Italy Call for Cases: Clinicians are invited to submit three cases related to peripheral neuropathies for discussion.
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Representatives from 22 ERNs gathered in Ghent, Belgium for the first ERN-wide workshop on healthcare transition in rare diseases. Over two days, healthcare professionals, young patient representatives, and ERN experts discussed ways to improve continuity of care as patients move from paediatric to adult services. Participants explored challenges, shared practical solutions, and worked on recommendations and minimum standards for transition pathways. Young members of the cross-ERN Youth Panel shared personal experiences, highlighting that transition is both a medical and personal journey. EURO-NMD was represented by Teresinha Evangelista, Houda Ali, Charlotte Handlberg, and Jakub Gietka, contributing the neuromuscular perspective.
This workshop also strongly connects with the work of the EURO-NMD Transition Task Force, which recently published the results of a survey exploring transition practices for neuromuscular diseases across Europe. The next step will be to continue this work and move towards expert consensus recommendations for transition of care in neuromuscular diseases.
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The Motor Neuron Diseases Working Group of EURO-NMD thanks everyone who participated in our special ALS Webinar Series in March 2026. This three-part series brought together internationally recognised experts to share the latest advances in ALS research and clinical practice, from non-motor symptoms to innovative biomarker-led trials and pre-symptomatic disease insights. If you missed any of the sessions or want to watch them again, replays are now available, giving you the chance to catch up on all discussions and key takeaways. Stay connected with the neuromuscular community and continue exploring the future of ALS research!
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Next EURO-NMD webinar:
26 March 2026 – 16:00 CET
"Orthopaedic Complications"
Speaker: Dr. Philip Henman (The Newcastle upon Tyne Hospitals NHS Foundation Trust, UK) Click here to register!
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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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23 June 2026 | 3 – 4 pm CEST
“Palliative Care in Adult Patients with Neuromuscular and other Rare Neurological Disorders”
Zoom Registration
Speaker: Marianne de Visser
Amsterdam University Medical Center, The Netherlands
30 June 2026 | 3 – 4 pm CEST
“Friedreich Ataxia”
Zoom Registration
Spaeker: Kathrin Reetz
RWTH-University Hospital Aachen, Germany
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SLA: UN APPROCCIO TRASLAZIONALE – Updates e stato dell’arte nel 2026 (Italian title)
Motor neuron diseases comprise a diverse group of conditions, with ALS being the most common and severe, leading to progressive functional decline. Recent research has significantly advanced our understanding of ALS, including insights into genetics, protein changes, and inflammation, as well as new diagnostic tools that are improving patient care. This in-person training will provide a comprehensive overview of the latest advances in ALS research and clinical practice, making it an excellent opportunity for clinicians, researchers, and anyone interested in the field. We encourage all interested participants to join and benefit from this cutting-edge educational experience.
Dates: 9–10 April 2026
Scientific Lead: Nilo Riva
Format: In-person training (English course)
Target Audience: Open to all
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05-07 May 2026 | Online The registration for ERN-RND Spring School “Next Generation Sequencing Diagnostics for Rare Neurological Diseases” taking place on May 5–7 is now open. The event will be held online, and participation is free of charge. During this Spring School, participants will gain insights into: - NGS Technologies
- Quality Assurance, Recommendations, and Case Presentations
- Clinical Applications of NGS
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13–16 June 2026 | Netherlands The PNS Annual Meeting (the Annual Meeting of the Peripheral Nerve Society) is the place to learn about the latest international research across specialties in peripheral neuropathy. It is also the premiere location for one-on-one discussions with experts in the field and connections with clinicians and scientists from various countries. The meeting has quickly established the reputation of being the largest peripheral nerve meeting in the world. During the meeting, junior and senior scientists of various backgrounds teach about the field’s most current and groundbreaking developments. Thanks to the support of our generous sponsors, the PNS continues to enhance its educational initiatives and expand its featured programming by incorporating special interest group parallel sessions — Charcot-Marie-Tooth and Related Neuropathies Consortium (CMTR), Inflammatory Neuropathy Consortium (INC), International Diabetes Neuropathy Consortium (IDNC), Neuropathic Pain Consortium (NPC), and Traumatic & Toxic Neuropathy Consortium (TTNC). #PNS2026
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27 June - 03 July 2026 | France Join this unique opportunity to deepen your expertise in myology, a rapidly evolving and exciting field in neuromuscular science. Open to all professionals with an interest in the field, this intensive course offers expert-led lectures, interactive workshops, hands-on sessions, and valuable networking opportunities. Participation is limited to 25 attendees, so early registration is encouraged. Fees:
• HCPs, allied professionals & researchers: €500
• Industry employees: €1200 The registration fee includes access to 40+ pre-recorded lectures (available before and after the course), live sessions in English, onsite visits, and a networking gala dinner.
Payment deadline: 6 May 2026
Accreditation in progress!
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27–30 June 2026 | Switzerland Join us for the 12th EAN Congress in the vibrant city of Geneva! Under the overarching theme “Brains, Bytes & Beyond: Tech in Neurology”, the congress will explore how technological innovation and artificial intelligence are transforming the field of neurology – from restorative therapies to clinical reasoning and decision-making. Set against the stunning backdrop of Lake Geneva and the Alps, this international meeting will bring together leading experts and professionals to share knowledge, discuss challenges, and shape the future of neurology. Don’t miss this unique opportunity to connect, learn, and experience Geneva’s rich culture and breathtaking scenery.
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Since 2008, the EPNS Research Meeting has brought together leaders, researchers, and young fellows in Paediatric Neurology to present work, exchange ideas, and foster networking and collaborative projects across Europe and beyond. Who can attend?
Child neurologist researchers at all career stages – senior colleagues, junior scientists, and PhD students – are welcome. Important: All participants must be EPNS members with a 2026 membership. Reduced fees are available for trainees, neuroscientists, and PhD students. For membership info, contact info@epns.info or visit EPNS Membership Fees. Abstract Submission: NOW OPEN – closing 23 March 2026, 23:59 CET. Don’t miss this opportunity to showcase your research and connect with the paediatric neurology community!
Dates: 16 – 17 Oct 2026 Location: Greece
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New Brochure on European Reference Networks now available!
In February 2026, the Directorate-General for Health and Food Safety (DG SANTE) published a new brochure presenting the 24 European Reference Networks (ERNs) and their key activities. This publication provides an overview of the ERNs’ mission, highlighting their role in improving diagnosis, care, and treatment for patients with rare and complex diseases across Europe. It also showcases ongoing projects and collaborative efforts that are shaping the future of specialised healthcare. We encourage you to take a look at this brochure to better understand how ERNs are working together to make a difference for patients and healthcare professionals alike.
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The high-level conference “Patients’ rights on cross-border healthcare and the European Reference Networks” will take place on 26 March. This event will examine the progress made by the European Union in improving access to cross-border healthcare, while also addressing ongoing challenges related to awareness and effective use of these rights. Although EU citizens are entitled to receive healthcare in any Member State and be reimbursed by their home country, these opportunities remain underutilized. The conference will bring together key stakeholders, including representatives from the 24 European Reference Networks (ERNs), National Contact Points on cross-border healthcare, and leading European experts.
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