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June 19, 2025, is a key date for the ERNs. The CPMS 2.0 Mobile Apps are now available on Android and Apple stores, making it easier than ever to collaborate on clinical cases anywhere, anytime. At the same time, release 4.2 of the desktop version is live. It includes advanced search, audit logs, better meeting agendas, and an improved interface for assistants and admins. These updates bring more flexibility, while keeping strong data security. Looking ahead, an open-source version and user community are in development to expand CPMS 2.0 to new healthcare uses. A big thank you to everyone from the ERNs, DG SANTE, and partners who helped make this happen.
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As part of the European Commission (EC) support for the functioning of the ERN registries within the current EU financial framework, EURO-NMD has allocated part of its budget to launch a pilot scheme aimed at supporting HCPs in populating the EURO-NMD Registry with patient data.The total budget allocated for the EURO-NMD Pilot Reimbursement Scheme is €123,000, corresponding to €1,500 for each participating HCP.The Data Entry Pilot Reimbursement Protocol outlines the process for reimbursing ERN EURO-NMD HCPs under this pilot scheme.
📌 Key conditions:
- 100 patients enrolled with mandatory EU RD data completed
- Cooperation contract signed with AP-HP (template available)
- Invoice submitted in line with contract terms
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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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Myopathies: from care to cure!
We are excited to announce a new webinar series on the Management and Treatment of Myopathies, organised by the EURO-NMD Muscle Working Group.
This 10-part series will cover important topics on therapeutic and multidisciplinary care in myopathies. Webinars will be held on Thursdays at 16:00 CEST, starting in June 2025 with six weekly episodes and continuing in October 2025 with the final four.
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Programme - June & July 202517 July 2025 - 16:00 CEST – "Therapeutic Approaches in Centronuclear Myopathies" (more info to come) delivered by Dr. Johann Böhm (Translational Medicine and Neurogenetics Department - Institute of Genetics and Molecular and Cellular Biology - IGBMC)
Review of current and experimental therapeutic strategies for centronuclear myopathies, highlighting future directions. Click here to register!
Further details and dates for the October sessions will be announced soon.
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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 16th EPNS Congress – Munich, 8–12 July 2025 EURO-NMD is excited to participate in the 16th European Paediatric Neurology Society (EPNS) Congress, taking place from 8 to 12 July 2025 at the International Congress Center (ICM) in Munich, Germany. We will be there with our fellow European Reference Networks (EpiCARE, MetabERN, and ITHACA) at a shared booth. Come visit us to learn more about our collaborative work in rare neurological and neurodevelopmental disorders! The EPNS Congress is a key event in the field of paediatric neurology, bringing together international experts to explore the latest research, clinical approaches, and future directions. The programme will feature: Plenary sessions on acute brain attack, movement disorders, and neuroimmunology Parallel and early morning teaching sessions covering epilepsy, ketogenic dietary therapies, ethics, and more
We look forward to engaging with the community and sharing insights from across the ERNs. See you in Munich!
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TREAT-NMD will soon host a one-day, in-person symposium dedicated to Duchenne Muscular Dystrophy (DMD), led by international experts in the field. This focused event is designed for professionals working in the pharmaceutical and biotech industries who want to deepen their knowledge and engage directly with key opinion leaders in DMD. Topics will include: Key objectives: Provide practical tools and insights to apply in the clinical or research setting Facilitate discussion, knowledge sharing, and collaboration among participants
This symposium offers a valuable opportunity to stay up to date on the latest in DMD and connect with leading voices in the field.
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EURO-NMD is pleased to highlight the upcoming Munich MG Masterclass, taking place on 25th and 26th July 2025 in Munich, Germany. This advanced educational event is directed by Professor Benedikt Schoser, a leading expert in neuromuscular disorders, and will bring together a distinguished faculty of clinicians and researchers in the field of myasthenia gravis (MG). The masterclass is designed to provide in-depth, clinically focused training on the diagnosis, treatment, and management of MG. Participants will benefit from interactive case discussions, expert lectures, and networking opportunities with specialists from across Europe.
This event represents an important opportunity for neurologists, trainees, and healthcare professionals involved in neuromuscular care to deepen their expertise and engage with the latest advances in MG management.
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Following the successful first edition, EURO-NMD is pleased to announce the Second CPMS Day, which will take place on 14 July 2025, from 15:00 to 17:00 CEST. Thematic Focus: Distal MyopathiesThis session will focus on the discussion of complex cases related to distal myopathies. Clinicians will have the opportunity to present challenging cases and receive expert feedback within the CPMS platform. Moderators:- Marianne de Visser
Neurologist, Emeritus Professor of Neuromuscular Diseases, University of Amsterdam, The Netherlands
Chair of the EURO-NMD Muscle Disease Specialist Group - Matteo Garibaldi
Neurologist and Assistant Professor, Sant’Andrea Hospital, Sapienza University of Rome, Italy
Member of the EURO-NMD Neuromuscular Pathology Specialist Group
Call for Case SubmissionsWe invite clinicians to submit three cases related to distal myopathies for presentation and discussion during the session. |
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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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