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As the summer continues, the EURO-NMD Coordination Team sends you warm wishes for a season of well-being and renewal. Whether you're taking time to rest or continuing your important work, we hope this period brings you energy and balance. We look forward to reconnecting with you in September, with new opportunities to collaborate and grow together. Stay well and enjoy the rest of the summer,
The EURO-NMD Coordination Team
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The 7th Neuromuscular Translational Training School organized by EURO-NMD and hosted by the Leiden University Medical Center (LUMC) focuses on therapy development from bench to bedside with a focus on neuromuscular disorders. The Neuromuscular Translational Training School contains lectures about the current state of the art of the management of acquired and genetic neuromuscular diseases, the different steps of drug development and the tools needed for this (outcome measures, biomarkers etc). It also stresses how patients should play a role in each of these steps and teaches how to communicate research to patients and the general public during interactive workshop sessions.
There’s high demand and spots are limited. Don’t wait, secure your place now!
📍 Leiden University Medical Center (LUMC)
📆 December 2-5, 2025
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ALS Care Survey – Share Your Expertise The ERN EURO-NMD ALS Care Pathway Working Group invites all ALS care professionals to participate in a European survey developed under the JARDIN Joint Action (WP6). This survey collects information on how care for ALS, and is currently organised across different countries. The results will support the creation of a European Care Pathway to improve coordination and access to care. The findings will contribute to the development of a European Care Pathway for ALS, supporting better coordination and access to care. Who can participate: - Neurologists and multidisciplinary teams involved in adult ALS care (18+)
- One response per centre/team
- Input from underrepresented regions (especially Eastern Europe) is strongly encouraged
- Team-based responses are welcome
Estimated time: 20 minutes
Deadline: 20 August 2025 You can save your progress and return later using the “Save as Draft” option. Thank you for your valuable contribution!
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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.
More information & a draft programme will be available soon! Endorsed by EURO-NMD, E-mit, and the Mitochondrial Medicine Society.
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Genomic Newborn Screening as a Gateway to Genomic Medicine: Ethical, Social, Regulatory, and Privacy Issues
Timeslot: Monday, 01 September 2025 | 16:00 CEST
Presenter: Prof. Alessandra Ferlini (Director, Medical Genetics Unit, University of Ferrara, Italy) This webinar will explore how genomic newborn screening is becoming a strategic entry point into genomic medicine. It will cover current approaches, the distinction between diagnosis and screening, and different types of screening. Key ethical, privacy, and regulatory challenges—such as genomic data ownership—will be discussed, along with global initiatives and early insights from the Screen4Care project. The session will conclude with a dialogue with regulators on future directions in policy and practice.
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EURO-NMD Mitochondrial Month – Webinar Series | September 2025EURO-NMD is pleased to announce the 2025 edition of its Mitochondrial Month Webinar Series, which will take place throughout September. This annual series is designed to highlight current clinical and research advances in mitochondrial medicine, offering a focused educational platform for healthcare professionals, researchers, and trainees working in the field of neuromuscular and mitochondrial disorders. This year, the series is endorsed and developed in collaboration with the European Society for Mitochondrial Medicine (E-MIT – https://www.e-mit.org/), in the context of Mitochondrial Awareness Month. The programme includes four expert-led sessions, scheduled weekly on Thursdays at 16:00 CEST, covering key topics ranging from early-onset presentations to differential diagnosis and neuropsychiatric implications in mitochondrial diseases.
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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The Norwegian Conference for Hereditary Neuromuscular Disorders is held in the Arctic city of Tromso in Norway from September 3rd-5th 2025. The conference is a meeting point between medical doctors from diverse specialites, multidisciplinary healthcare personell, researchers and other persons with interest in neuromuscular disorders, as well as adults with neuromuscular disorders and their relatives. The conference strive for a mix of lectures from distinguished international speakers, networking opportunities, and a welcoming and relaxing atmosphere. The theme for 2025 is “Neuromuscular disorders from a bird’s eye view”, encompassing a broad range of topics from diagnostics to treatment and life with NMDs.
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Join us in Vienna, Austria, from October 7th to 11th, 2025, for the 30th annual International Congress of the World Muscle Society. Building on the success of recent Congresses in Halifax, Charleston, and Prague, the WMS 2025 Congress promises to be a remarkable event for all those involved in the study and treatment of neuromuscular disorders.
The WMS 2025 Congress will feature an innovative scientific programme, poster sessions, short oral presentations, and ample opportunities for networking and knowledge exchange. Attendees will have the chance to engage with the latest advancements in neuromuscular disease research and treatment.
EURO-NMD will be present with a booth, we look forward to connecting with many of you there.
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The second edition of the European CMT (Charcot-Marie-Tooth) Specialist Conference, will take place from October 23 to 25, 2025, in the vibrant city of Antwerp, Belgium. Following the success of the inaugural event, this second edition will once again gather clinicians, researchers, geneticists, and allied health professionals from across Europe and beyond, all dedicated to improving care and advancing research for people living with Charcot-Marie-Tooth disease and related inherited neuropathies. This conference is a common project of the European CMT Federation (ECMTF), the University of Antwerp as the host, and the European CMT Research Association (ECRA) that was created as a follow-up of the 1st European Charcot-Marie-Tooth Specialists Conference 2023 in Paris (Paris Conference) with the aim to stimulate cooperative research on CMT. Mark your calendars and prepare to join us for this unique event at the heart of the European neuromuscular community. Read their press release: Uniting for Health
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The World Orphan Drug Congress (WODC) 2025 is the premier global event dedicated to advancing the development and delivery of treatments for rare diseases. Bringing together industry leaders, researchers, policymakers, patient advocates, and biotech innovators, this conference serves as a vital platform for driving progress in orphan drug development, regulatory frameworks, and patient access. ERN members and Patient organizations have the possibility to get free tickets by selecting “Free tickets for Patient Groups” and completing the form (the label says Patient groups but the page mentions “The following guest form is intended for patient group organisations, ERNs, charities, public health officials , and individuals working at selected pharmaceuticals/biotechs” and we received confirmation that ERN members are entitled to free tickets). |
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EURO-NMD is pleased to share the launch of the ERDERA Networking Support Scheme — a new funding initiative designed to strengthen collaboration in the fields of rare diseases and rare cancers across Europe. The scheme aims to: It is open to clinicians, researchers, patient advocacy organisations, and research managers working within existing networks or looking to develop new collaborations.
Under the scheme, applicants can request up to €30 000 per networking event to cover meeting costs, travel costs, hybrid-meeting platforms and other essentials. Rounds will be held every six months until April 2029—or until the dedicated budget is exhausted—providing a response pathway for emerging collaborations of the partnership.
Applications are accepted on a rolling basis and collected every six months, with the first round closing on 7 October 2025. |
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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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