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We are delighted to announce the second edition of the Summer School, co-organized by the European Reference Network for rare neuromuscular diseases (ERN EURO-NMD) and the French network of expertise on NMDs (FILNEMUS). Taking place from 24-27 September 2025, this Summer School will cover essential aspects of care, extending beyond the neuromuscular sphere. The program will include a wide range of topics to support healthcare professionals in addressing the diverse challenges of neuromuscular diseases (NMDs).
Key topics: - Extramuscular involvement: cardiac, endocrinological, gastrointestinal, skin and respiratory systems
- Dysautonomia, central nervous system disorders and epilepsies
- Rehabilitation
- Palliative care
- Psychological impact of NMDs
- Management of relationships and sexuality
- Management of pregnancy
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We are pleased to welcome Rym as the new Project Manager at EURO-NMD. Rym has over 10 years of experience in managing projects in the non-profit sector. She has worked on programmes supported by USAID, NIH, the European Union, and AICS. She has strong skills in project coordination, financial management, and partnership development. At EURO-NMD, Rym will work on several Working Groups coordination and will manage financial aspects of the project independently. She also holds a Research Master’s degree in Information and Communication Sciences, which gives her excellent communication and analysis skills. Rym is motivated by a strong wish to create positive social change, especially in important fields such as Rare Diseases. We are happy to have her with us!
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EURO-NMD is pleased to present the new Patient Tools & Resources section on its website. This dedicated space offers a wide range of practical tools, reliable information, and supportive materials for anyone interested in neuromuscular diseases—including patients, families, caregivers, healthcare professionals, and researchers. Whether you are looking for educational materials, care tips, support services, or guidance on patient care, this section gathers everything in one convenient place. Stay informed and up to date with the latest developments in neuromuscular disease research and care.
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Join us for an insightful session where experts will discuss the latest advancements in genetic testing and how these methods are helping to diagnose and understand neuromuscular diseases. This webinar will also include a patient perspective, offering valuable insights into how genetic diagnosis affects the lives of individuals with neuromuscular diseases. Key topics include: The importance of genetic testing in diagnosing neuromuscular diseases New developments in genetic technologies How genetic diagnosis helps improve patient care The future of personalized medicine in neuromuscular diseases Patient stories and experiences with genetic diagnosis
Friday 11 April 2025
Time: 16:00 - 17:00 (CEST)
Topic: Genetic Diagnosis of Neuromuscular Diseases Delivered by Dr. Marcella Neri (Azienda Ospedaliero – Universitaria di Ferrara, Italy) Arabela Acalinei (EAMDA, Romania) & Madelon Kroneman (Spierziekten Nederland)
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All about FSHD – May 2025EURO-NMD is excited to announce a 4-episode webinar series on Facioscapulohumeral Muscular Dystrophy (FSHD), coming this May. These free online sessions will cover the latest research and clinical developments in FSHD, with expert speakers from across Europe. Each webinar will focus on a key aspect of FSHD, including pathophysiology, clinical management, genetics, and emerging therapies. Participants will also have the chance to interact with professionals and gain insights from both scientific and patient perspectives. Don't miss this chance to stay up to date on FSHD research and advancements!
👉 https://ern-euro-nmd.eu/educational-news/euro-nmd-webinar-series-all-about-fshd-may-2025/
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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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Join us at the Kick-off Meeting of the European Clinical Research Network for Myotonic Dystrophies (DMs), taking place in Munich on 14–15 April 2025. This important event will bring together experts, clinicians, and researchers to advance collaborative clinical research and accelerate therapeutic development for myotonic dystrophies across Europe. The network aims to: Facilitate clinical trials across Europe Contribute to the DM-CRN DM1 natural history database Promote collaboration and knowledge exchange among European DM experts Standardize research and clinical protocols for better patient outcomes
Antonio Atalaia, Clinical Advisor at EURO-NMD, will deliver a talk on the EURO-NMD Registry and its crucial role in international research and data harmonization. Join us for this exciting and foundational step towards stronger European coordination in DM research and care.
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The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into potential therapies. Join us in Amsterdam for what promises to be a landmark meeting.
We are please to announce the 2025 International Research Congress will take place June 12-13 in Amsterdam and online. The deadline to register is May 15, 2025.
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Join Us at the European Human Genetics Conference in Milan – May 2025 Following successful events in 2014 and 2018, William Newman, President of the ESHG, invites us to Milan, Italy, for the next European Human Genetics Conference from May 24-27, 2025. Milan, known for its fashion, culture, and finance, will be buzzing with cutting-edge genomic discoveries. The conference program will include educational sessions, symposia, invited speakers, and posters, covering a wide range of topics in human genetics. Fellowship opportunities will also be available for younger members. The event will be hybrid, allowing virtual participation for those unable to attend in person. However, we encourage you to join us in Milan to experience the best science firsthand, build collaborations, and network with sponsors and exhibitors. Save the dates and get ready for an unforgettable experience in Milan! 📅 Dates: May 24-27, 2025
📍 Location: Milan, Italy Register for ESHG 2025 Hybrid Conference!
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Join leading neurologists, researchers, and healthcare professionals in Helsinki, Finland, for the 11th Congress of the European Academy of Neurology (EAN). This premier event will feature pioneering research, plenary lectures, and interactive workshops, covering a wide range of topics, including neurodegenerative diseases, stroke, epilepsy, and multiple sclerosis. Helsinki’s vibrant culture and stunning surroundings provide the perfect backdrop for networking and knowledge exchange. Don’t miss this essential event for advancing neurology and improving patient care.
Secure your spot before 16 April to take advantage of early bird registration discounts!
📅 Dates: June 21–24, 2025
📍 Location: Helsinki, Finland Stay tuned for registration details on the official EAN Congress 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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Don’t miss the live stream of the conference “Towards an EU Action Plan on Rare Diseases” tomorrow, 11 April. This event, aimed at clinicians, researchers, and patients, is held under the patronage of the Polish Ministry of Health and the European Economic and Social Committee, with support from ERDERA, MRA (ABM), EURORDIS, and Krajowe Forum Orphan. Join us for this important discussion and stay informed about future actions for rare diseases in the EU.
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