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The European Reference Networks (ERNs) have produced a position paper outlining their evolution since 2017, highlighting key achievements and documenting their progressive consolidation as emerging infrastructures supporting both the care and research of rare diseases. This paper is a milestone in ERNs existance as we approach a pivotal moment, and aims to ensure the recognition of the achievements towards a growing structural and funding stability.
This paper represents a key milestone in the development of the ERNs at a pivotal stage in their evolution, and seeks to secure recognition of their achievements while supporting progress towards greater structural maturity and sustainable funding.
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The EURO-NMD Academy is pleased to offer the Mitochondrial Disorders Course, accredited by the European Accreditation Council for Continuing Medical Education (EACCME®). Developed in collaboration with EURO-NMD, ERN-RND (Rare Neurological Disorders), and ERN EpiCARE (Rare and Complex Epilepsies), this expert-led course addresses key gaps in postgraduate education by providing a comprehensive and multidisciplinary overview of mitochondrial diseases. Spanning 11 modules, it covers essential topics such as genetics, clinical presentation, diagnosis, and emerging therapies. Designed for healthcare professionals across specialties, the course offers flexible, self-paced learning with an estimated workload of 20 hours. Participants who complete the course successfully can obtain CME credits and a certificate. Enrol now via the EURO-NMD Academy platform: https://euronmd.lilicampus.com/
Stay up to date with the latest advances in neuromuscular disorders through EURO-NMD Academy.
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Share Your Experience: Help Shape the European ALS Care Pathway
Deadline extended to: 25 May 2026 The ALS Care Pathway Working Group, part of ERN EURO-NMD and the JARDIN Joint Action, invites people living with ALS and their carers across Europe to take part in an online questionnaire and share their experiences. The survey aims to identify gaps in care and support, highlight unmet needs, and better understand the real-life challenges faced by patients and families. These insights will contribute to the development of a harmonised European ALS care pathway to improve care and reduce disparities across countries. Participation is open to people living with ALS, carers and family members, with a particular focus on reaching voices from as many European countries as possible. Click here to download a customizable PowerPoint template to create a printable leaflet in your language, including a QR code, for distribution across hospitals, centres, and patient organisations. The leaflet is already available in PDF format in English, French and Italian.
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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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Learn how to use the Clinical Patient Management System (CPMS), the secure European platform that allows specialists across the Euro-NMD ERN 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.
Make the most of the CPMS to strengthen collaboration and improve care for people with rare diseases.
Register here!
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EURO-NMD is pleased to announce a new Neuropathology Webinar Series. This series brings together leading experts from different countries who will share their knowledge and experience in the field of neuropathology. The webinars will focus on important topics such as nerve and skin biopsies, explaining how these techniques are used to better understand and diagnose neuromuscular diseases. Throughout the series, participants will learn about both basic and more advanced methods. The speakers will explain step by step how biopsies are performed, how samples are analysed in the laboratory, and how the results help doctors make accurate diagnoses. The sessions will also introduce modern technologies and new approaches that are improving patient care.
Dates: April – June 2026
Time: 16:00–17:00 (CEST)
Format: Online & Free webinars
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Next EURO-NMD webinar:
Date: Thursday, 7 May 2026
Speaker: Prof. Mathilde Duchesne (CHU Limoges, France)
Moderators: Dr. Matteo Garibaldi (Sant’Andrea Hospital of Sapienza University of Rome, Italy), Prof. Joachim Weis (Director, Institute of Neuropathology, RWTH Aachen University Hospital, Aachen, Germany)
Content: Infectious neuropathies, nerve tumours, and infiltration; the role of neuropathology in diagnosis 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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- Overview: Co-developed by ERN EURO-NMD, EATRIS, EURORDIS, LUMC, and FFRD in the context of the EJPRD (European Joint Programme on Rare Diseases), this course follows the journey from discovery to treatment, explaining how medicines are developed, tested in clinical trials, and approved. It also highlights key issues in rare disease drug development, including drug repurposing, patient-reported outcomes, and patient involvement in preclinical and clinical research.
- Access: Free for 5 weeks after enrollment
- Expert Support: Experts are online from April 27 to June 13
- Target Audience: Researchers, students in medicine and health-related fields, healthcare professionals, biotech and start-up developers, and patient advocacy representatives
- Accreditation: CPD-certified
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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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29 April 2026 | Online We cordially invite you to participate in the next edition of the conference under the First Priority Research Area (POB1): “Computational Oncology and Personalized Medicine: From Genome to Treatment: AI & Precision Medicine (COPM2026)”, which will be held on April 29th, 2026, as an online event. We particularly encourage the submission of papers and active participation in the conference of young PhD students, postdocs, master’s students, and supervisors and members of scientific societies. The conference will be held in English, and participation (both active and passive) is free of charge.
For those interested in passive participation, please contact copm@polsl.pl.
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06 June 2026 | World COL6 Myopathy Day 2026 We are pleased to invite you to take part in the 2nd World COL6 Myopathy Day, which will be held on 6 June 2026 as an international online scientific meeting. This event will bring together clinicians, researchers, and patient representatives from around the world to share the latest advances in: - Clinical management
- Basic research
- Emerging therapeutic approaches
You are warmly invited to pre-register here:
https://col6.world/applicationform By pre-registering, you will receive updates on the programme, invited speakers, and access details as the event approaches.
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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 World Duchenne Organization invites healthcare professionals and patient organization representatives to attend the Duchenne Care Conference 2026, taking place online on May 26 and 27, 2026. Organized by the World Duchenne Organization, the Duchenne Care Conference 2026 is an annual international meeting dedicated to improving care for individuals living with Duchenne muscular dystrophy and Becker muscular dystrophy. This event helps healthcare professionals and patient advocates stay informed about the latest insights and developments in Duchenne and Becker care. Dates: 26 – 27 May 2026 Times: 15:00 – 18:00 CEST (Amsterdam time) Format: Online via Zoom
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Launch of the 2026 Call for Affiliated Partners The Board of Member States (BOMS), meeting in Rome in 2025, endorsed the launch of a new Call for Affiliated Partners within the European Reference Networks (ERNs), marking an important step in strengthening collaboration across the ERN community. For ERN EURO-NMD, the call is open to three eligible countries currently not represented in the network: Croatia, Romania and Slovakia. Launched on 13 April 2026, the call will remain open for applications until 1 September 2026, with final endorsement expected in March 2027. The initiative aims to welcome new Affiliated Partners, further strengthen European cooperation in rare neuromuscular diseases, and expand the reach and impact of ERN EURO-NMD.
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[NEW TRANSLATIONS AVAILABLE!] 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!
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