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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
- Public registration will open soon
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
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EURO-NMD is proud to announce its first EURO-NMD Workshop dedicated to ATTRv Neuropathy Treatments: From Molecular Innovation to Multistakeholder Access. This high-level workshop will bring together expert clinicians, researchers, patient organisations, regulators, health technology assessors and industry representatives to improve clinical management and equitable access to therapies for hereditary transthyretin amyloidosis (ATTRv) neuropathy. Key objectives include: Identifying patient needs and expectations Proposing a common diagnostic workflow Defining minimal standards for treatment availability, delivery and follow-up
The programme will also address early diagnosis strategies, emerging therapies, treatment sequencing, and access across health systems, with strong patient involvement. Places for non-faculty participants are available through a pre-registration process, allowing the Scientific Committee to select attendees. A consensus-driven summary of the workshop discussions will be submitted for publication within 6–12 months. 👉 Join this collaborative effort to shape the future of ATTRv neuropathy care in Europe!
📅 8 – 9 December 2025
đź“Ť Paris, France
More info here!
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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
đź“„ Download the flyer to support optimal nutritional care for individuals with NMDs!
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EURO-NMD is pleased to endorse the 9th International Conference on Mitochondrial Disease and Novel Therapies, taking place 10–12 November 2025 at the Wellcome Genome Campus, UK, and online. This key event will bring together global experts in clinical and translational mitochondrial medicine to foster collaboration and accelerate the development of effective therapies. The programme includes keynote talks, abstract-selected presentations, poster sessions, and a panel discussion on lessons learned from clinical trials. Final programme available here!
Endorsed by EURO-NMD, E-mit, and the Mitochondrial Medicine Society.
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EURO-NMD Muscle Month Webinar Series Management and Treatment of Myopathies - Part 2 We are pleased to launch the second part of the EURO-NMD Muscle Month Webinar Series, organised by the EURO-NMD Muscle Working Group. After six successful episodes in June 2025, the series continues this autumn with the final four webinars all taking place at 16:00 CEST., focusing on key aspects of therapeutic and multidisciplinary care in myopathies: 👉 Don’t miss these insightful sessions on the latest advances in myopathy care!
Webinar programme click here!
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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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18.11.2025, 3-4 pm CET
"Recent Advances in Episodic Ataxias" delivered by Elisabetta Indelicato and David Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA.
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25.11.2025, 3-4 pm CET
"Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms (NEUROGED Guidelines)" delivered by Alessandra Fanciulli, Pietro Guaraldi, Medical University Innsbruck, Austria & IRCCS – Institute of Neurological Sciences of Bologna, Italy.
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The 2nd European Charcot-Marie-Tooth (CMT) Specialists Conference will take place in Antwerp, building on the success of the inaugural 2023 edition in Paris. Jointly organised by the European CMT Federation (ECMTF), the University of Antwerp, and the European CMT Research Association (ECRA), the event aims to foster collaboration, knowledge exchange, and innovation in the CMT field. Around 150 participants, including clinicians, researchers, patient representatives, industry partners, and policy-makers, are expected. The programme will feature two days of plenary and poster sessions covering basic research, genetics, clinical care, therapy development, outcome measures, clinical trials, and new themes such as data sharing, AI, and mentorship of junior researchers. 👉 More details on the programme, registration, venue, and pre-conference webinars are available on the official website.
📄 Read the Press Release here.
📅 23–25 October 2025
đź“Ť Antwerp, Belgium
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As part of the ERN-RND Annual Meeting 2025 a Scientific Symposium on “European Healthcare for RND Patients” will be held on Tuesday 28th October 2025, which will be streamed online.
The ERN-RND Scientific Symposium is open to everyone interested in joining remotely. This session will explore the status of European healthcare for rare neurological diseases within the European Reference Networks (ERNs), including discussions on cross-border access to highly specialised therapies, multidisciplinary case studies, and the integration of ERNs into national healthcare systems.
The participation is free of charge, only registration is required.
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ERDERA will mark its 1st anniversary with a stimulating online event open to the entire rare disease community. Leading experts in the field of neurology, neurometabolic diseases and patient advocacy will take the floor next 30 October, from 09:00 to 11:20 CET, bringing both scientific and lived experience to the table. This online event is an integral feature of ERDERA’s 2nd General Assembly. Besides listening to powerful keynote speeches, participants will learn firsthand how the partnership is transforming the future of rare disease research through bold, data-driven, collaborative innovation. ERDERA scientific coordinator, Daria Julkowska (INSERM) will also share first-hand insights into ERDERA’s first-year achievements, as the partnership moves into its second year towards a shared vision of a stronger European rare disease research ecosystem.
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Join us for “Advancements in Neuromuscular Disorders: From Diagnosis and Cutting-Edge Treatments to Palliative Care”, a dynamic one-day scientific event bringing together international experts to discuss the latest breakthroughs in neuromuscular disease care — from early diagnosis to innovative therapies and compassionate palliative approaches. Programme highlights: New developments in ALS research Autoantibodies in inflammatory neuropathies Advances in mitochondrial disease diagnosis and treatment Evolving therapies for myasthenia gravis Palliative care in neuromuscular disorders
Special features:
- Opening ceremony with 2025 Prizes & Fellowships
- Industry symposia on Pompe disease (Amicus) & hATTR amyloidosis (Alnylam)
🤝 Networking opportunities throughout the day Join us in Leuven for a full day of cutting-edge science, collaboration, and shared commitment to improving neuromuscular care!
đź“… 15 November 2025
đź“Ť Irish College, Leuven, Belgium
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Boost collaboration, Improve patient care, Master CPMS. Join our upcoming online training sessions and learn how to make the most of the Clinical Patient Management System (CPMS) — the secure European platform that enables specialists across the EURO-NMD network to work together on complex rare disease cases. In these short, hands-on sessions, you will learn how to: - Navigate the CPMS platform with confidence
- Create and manage panels efficiently
- Share patient information securely across borders
Take this opportunity to strengthen collaboration across the network and improve care for people living with rare diseases.
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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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Stay updated with AFM-Telethon's "Advances in Research" documents AFM-Telethon's "Advances in Research" documents, updated annually in June, provide a comprehensive review of the latest medical and scientific discoveries in neuromuscular diseases. These valuable resources help keep the global neuromuscular community informed about the latest research developments. Highly respected within the field, many of these French-language documents have been translated into English for wider accessibility. Additionally, the CMT Advances are also available in Italian, thanks to the support of the Italian association. Additionally, the "Overview of Neuromuscular Diseases" by AFM-Telethon provides a concise description of all neuromuscular disorders, including information on genes involved, ORPHA and OMIM codes, and treatment recommendations. This handy pocket guide offers a quick reference for the entire field. |
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