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2026 is off to a great start!
With renewed energy and shared ambition, EURO-NMD looks forward to another year of collaboration, innovation, and meaningful connections!
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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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Learn how to use the Clinical Patient Management System (CPMS), the secure European platform that allows specialists across the EURO-NMD to collaborate on complex rare disease cases. These short training sessions will help you navigate the system, create and manage panels, and share patient information safely and efficiently.
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Open Call: 2026 On-Site Muscle & Nerve MRI TrainingERN 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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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
Anyone who is not a member of ERN EURO-NMD is warmly welcome to attend our Annual Meeting. Pre-registration is now open!
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 Brain Institute
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February is Genetics at EURO-NMD! As part of Genetics Month, EURO-NMD is pleased to host a four-episode webinar series bringing together clinicians, researchers and experts involved in genetics and rare neuromuscular diseases. Each session combines scientific insight with practical perspectives, fostering knowledge exchange across the European research and clinical community. This webinar series is organised in partnership with ERN-RND for Rare Neurological Disorders and the European Academy of Neurology (EAN). ___________________________________________________
Programme
Episode 1: Thursday, 5 February 2026 | 16:00 – 17:00 CET
Title: ERDERA Diagnostic Research Workstream
Speaker: Dr. Ana Topf, Newcastle University, UK
Moderator: Dr. Massimiliano Filosto, University of Brescia, Italy Click here to watch the replay of the webinar!
Episode 2: Thursday, 12 February 2026 | 16:00 – 17:00 CET
Title: CPMS Use and Value for Genetic Case Discussions
Speaker: Dr. Fernanda Fortunato, University Hospital St Anna, Ferrara, Italy
Moderator: Prof. Alessandra Ferlini, University Hospital St Anna, Ferrara, Italy Replay available soon! Episode 3: Thursday, 19 February 2026 | 16:00 – 17:00 CET
Title: Genetics of Amyotrophic Lateral Sclerosis and Impact on New Therapies
Speaker: Dr. Marcella Neri, University Hospital St Anna, Ferrara, Italy
Moderator: Prof. Gabriele Siciliano, University of Pisa, Italy Click here to register!
Episode 4: Thursday, 26 February 2026 | 16:00 – 17:00 CET
Title: Newborn Screening and Impact on Rare Diseases
Speaker: Prof. Jim Bonham, President of the International Society of Neonatal Screening
Moderator: Prof. Alessandra Ferlini, University Hospital St Anna, Ferrara, Italy 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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03 March 2026 at 3-4 pm CET
"Getting the most out of physiotherapy in Dystonia"
Speaker: Maarten Nijkrake
Radboud University Medical Center, Nijmegen, The Netherlands
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Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a crucial role in building an international rare disease community—multi-disease, global, and diverse, yet united in purpose. Rare Disease Day is observed every year on 28 February (or 29 February in leap years—the rarest day of the year). It was established and is coordinated by EURORDIS in partnership with over 70 national alliance patient organisations. The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels.
👉 https://www.rarediseaseday.org/
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13–16 June 2026 | Sweden The European Society of Human Genetics brings together geneticists with many backgrounds: from research, diagnostic laboratories, clinical services, public health, ethics, legal and societal issues. They come from all over Europe and beyond. Excellent speakers will give their presentations, but also many opportunities exist to meet colleagues over a coffee or tea. The field of genetics is ever-expanding. The conference will be an excellent opportunity to discuss your own questions for tomorrow. The European Society of Human Genetics is planning the 2026 conference as a hybrid conference. This will allow attendees to participate in-person or online through a dedicated ESHG virtual conference platform.
Participants can only register for the full conference. It is not possible to book day tickets. Abstract Submission Deadline Extended: Monday, February 16, 2026
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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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The European Conference on Rare Diseases & Orphan Products (ECRD) is Europe’s largest patient-led policy-shaping event dedicated to rare diseases. Organised by EURORDIS, it brings together people living with rare diseases, patient advocates, policymakers, healthcare professionals, industry leaders, regulators, and Member State representatives to advance impactful policies and initiatives. In 2026, the conference will take place in Prague, welcoming over 500 participants onsite and 300+ online through a hybrid format that promotes connection, knowledge exchange, and collaboration across the rare disease community. ECRD 2026 will also mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases, defining shared priorities, structure, governance, funding, and delivery mechanisms — ensuring collective ownership and lasting impact across Europe. By joining ECRD 2026, you will take part in shaping the future of rare disease policy in Europe and beyond, contributing to real, lasting change for millions of people. 👉 Learn more and explore outcomes from past ECRDs on the official ECRD website
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The John Walton Muscular Dystrophy Research Centre (Newcastle University) is launching a retrospective international multicentre study to build one of the largest cohorts of patients with multisystem proteinopathies (MSPs). The study aims to better define clinical phenotypes, genotype–phenotype correlations, disease trajectories, and identify novel genetic variants. Clinicians worldwide are invited to contribute patients carrying pathogenic, likely pathogenic, or VUS variants in:
VCP, HNRNPA2B1, HNRNPA1, TIA1, SQSTM1, MATR3, OPTN, ANXA11, HSPB8, TFG, TARDBP. Ethically approved and sponsored by Newcastle University. Contributors will be acknowledged as co-authors. 📩 Contact:
Marianela.schiava@newcastle.ac.uk
Jordi.Diaz-Manera@newcastle.ac.uk
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The University of Ottawa invites applications for a Tier 2 Canada Research Chair (CRC) in neuromuscular disease and related cardiac disorders. The successful candidate will hold a clinical non-tenure track position with the Faculty of Medicine’s Department of Medicine, its affiliated hospital The Ottawa Hospital, and its affiliated research institute (The Ottawa Hospital Research Institute ; OHRI with the potential for other cross-appointments). The candidate will be a member of the Brain-Heart Interconnectome (BHI). The BHI is a ground-breaking interdisciplinary research program aimed at accelerating prevention, detection, treatment and care of interconnected brain/neuromuscular and heart disorders through research co-produced with patients and other knowledge users. The Chairholder will hold or will be eligible to hold a license to practice medicine with the College of Physician and Surgeons of Ontario (CPSO).
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