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We are delighted to announce that the 8th Annual Meeting of the European Reference Network for Rare Neuromuscular Diseases (ERN EURO-NMD) will take place from March 5 to 7, 2025 in Essen, Germany.
This event remains an essential platform for advancing research, sharing knowledge and promoting collaboration within the neuromuscular disease community.
More info to come, so stay tuned!
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Dive deep into the world of Neuromuscular Diseases this summer!
Join us for not just one, but TWO incredible Summer Schools dedicated to unraveling the mysteries of neuromuscular conditions: 1️⃣ 6th Neuromuscular Translational Summer School Dates: 9-12 July 2024 Location: Leiden University Medical Center, The Netherlands The 6th Neuromuscular Translational School organized by EURO-NMD and TREAT-NMD focuses on therapy development from bench to bedside with a focus on neuromuscular disorders. The Translational Summer 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).
Click here to see the preliminary Programme!
More info here!
__________________________________________________________________ 2️⃣ Summer School on Multidisciplinary Management of Neuromuscular Diseases Dates: 12-14 September 2024 Location: Marseille, France Description: The upcoming Summer School on Multidisciplinary Management of Neuromuscular Diseases is co-organized by EURO-NMD and Filnemus. The program will bring together experts from various disciplines to explore the latest advancements and best practices in the field of neuromuscular disease management. Through a series of workshops, lectures, and interactive sessions, participants will gain invaluable insights into the multidisciplinary approach to diagnosis, treatment, and care coordination. Click here to see the preliminary Programme!
More info here!
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We are delighted to share the inspiring journeys of courageous people living with neuromuscular disease. Their stories are a testament to the resilience, strength and power of community support.
A innovative collaboration between patients and clinicians aimed at producing insightful Patient Journeys focused on three pathologies: Myasthenia Gravis, Myofibrillar Myopathy, and Multifocal Motor Neuropathy. This innovative initiative seeks to shed light on the unique experiences, challenges, and triumphs of individuals living with these conditions. Each Patient Journey will offer a unique perspective, delving into the diagnosis process, treatment strategies, daily challenges, milestones, and moments of resilience and hope. These narratives will serve as invaluable resources for patients seeking support, clinicians striving for greater insight, and researchers pursuing innovative solutions.
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In March 2024, the EAN published a new guideline on the management of amyotrophic lateral sclerosis (ALS) in the European Journal of Neurology, in collaboration with the European Reference Network for Neuromuscular Diseases (ERN EURO-NMD). This guideline represents a significant update to the EFNS guideline on ALS management, originally published in 2012, and stands as the first EAN guideline on ALS. The development of this guideline took several years, during which our working group had the privilege of collaborating with Cochrane Response for evaluation of the available evidence. Numerous stakeholders contributed to this endeavour, including key opinion leaders from various European nations, systematic reviewers from Cochrane Response, patient representatives from EUpALS, as well as stakeholders from the EAN, ERN EURO-NMD, and ENCALS.
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The XXIV National Congress of the Italian Association of Myology is set to be an important event focusing on the theme of "Neuromuscular Diagnosis: A Multidisciplinary Approach from Histopathology to Molecular Genetics, with a Focus on Inflammatory and Toxic Myopathies." This theme highlights the comprehensive nature of diagnosing neuromuscular disorders, emphasizing the importance of integrating various diagnostic techniques and approaches to provide accurate assessments and effective management strategies. The congress will likely feature sessions and discussions exploring the role of histopathology, molecular genetics, and other diagnostic modalities in the evaluation of neuromuscular diseases. Attendees can expect presentations on the latest advancements in diagnostic methodologies, including the use of imaging techniques, biomarkers, and genetic testing, to better understand the underlying mechanisms of inflammatory and toxic myopathies.
📆 5 June 2024
📍 Rome, Italy
Click here for the Programme!
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The Conference Advances in Neuromuscular Pathology in Childhood is an appointment of reference for pediatricians and child neurologists who wish to keep up to date in a constantly evolving field, share experiences and establish contacts with experts and colleagues.
In this 10th edition, we will address the remarkable progress in the diagnosis and treatment of neuromuscular diseases, thanks to the development of molecular diagnostic techniques and gene therapies.
A valuable opportunity to update you with the aim of diagnosing, monitoring and treating patients with neuromuscular diseases with the highest quality standards.
📆 13 – 14 June 2024
📍 Barcelona, Spain
Click here for the Programme!
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Neuropathies is bringing together professionals from various specialties to shed light on the complexities of neuropathic disorders. It's a vibrant platform where neurologists, geneticists, pathologists, and other experts gather to illuminate the latest research findings and clinical implications. Through lively discussions and collaborative exchanges, attendees ignite new ideas and approaches to enhance patient care.
This gathering isn't just informative; it's a ray of hope for individuals affected by neuropathies, promising brighter prospects through shared knowledge and teamwork. This year, Tallinn, the enchanting capital of Estonia, with its rich history and vibrant culture, provides the perfect backdrop for the gathering, that is aimed to rotate between Baltic countries every year in August.
📆 23 - 24 August 2024
📍 Tallinn, Estonia
Click here for the Programme!
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On behalf of Mitocon and its Scientific Program Committee, we are pleased to announce the organization of the 14th Mitochondrial Disease Conference, which will be held on October 25-27, 2024 at the Best Western Hotel Galileo Padova.
As usual, the event will consist of two parts: the scientific meeting, 25-26 October and the patient and family meeting on Sunday 27 October. During the Scientific Conference, the participation of patients and families will also be encouraged. The Mito Conference 2024 aims to provide a comprehensive overview of the latest advances, challenges, and potential opportunities in the field of mitochondrial research. By covering diverse topics ranging from basic science to mitochondrial biology, with a focus on therapies and the role of artificial intelligence in mitochondrial medicine. Together, let’s light the way to a cure for all mitochondrial diseases!
Click here for the Programme!
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We’re happy to announce our upcoming webinar series on Gene Therapy co-organized by EURO-NMD, ERN-RND, for rare neurological diseases, ERN EpiCARE, for rare and complex epilepsies and European Academy of Neurology (EAN), where we’ll delve into the latest advancements and breakthroughs in this interesting field. Join us as we will explore: - Cutting-edge research in gene therapy: Discover the latest developments and innovations driving gene therapy forward.
- Clinical applications and successes: Learn about successful gene therapy treatments and their impact on patients’ lives.
- Ethical considerations and future prospects: Delve into the ethical implications of gene therapy and explore future directions for research and application.
- Expert discussions and Q&A sessions: Engage with leading experts in the field, participate in insightful discussions, and get your questions answered.
Thursday 6 June 2024, 16:00 – 17:00 CEST "Health technology assessment (HTA) of genetic therapies" by Prof. Oriana Ciani (SDA Bocconi School of Management) hosted by ERN EpiCARE.
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You can also register for episode 8 & 9 now:
Thursday 13 June 2024, 16:00 – 17:00 CEST Episode 8: "Genetic therapies and therapy developments for ALS" by Dr. Juan Francisco Vázquez Costa (University of Valencia, Spain) Click here to register!
Wednesday 19 June 2024, 16:00 – 17:00 CEST
Episode 9: Safety issues in gene therapies and how to address them by Prof. Francesco Muntoni (University College London) Click here to register!
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Click here fore more information on the other episode of the series and to see the full schedule!
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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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Filnemus and ERN EURO-NMD are organizing a Webinar on the ERN EURO-NMD Registry on Wednesday, June 12, 2024 at 13:00 CEST. This webinar presented by Carla D'Angelo, our Senior Project Manager, will cover the following topics: - General overview of the register
- Participation process in the EURO-NMD Register
- Particularities of the participation process in France (Authorizations Required) - Overview of data access policies and security measures
- Collaboration with BaMaRa
- Questions & Answers
The webinar will be held in French.
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The Peripheral Nerve Society Annual Meeting is the place to learn about the latest international research across specialties in peripheral neuropathy. As the largest peripheral nerve meeting globally, it is the premier venue to connect with your peers. The PNS Annual Meeting has become the world’s largest and most comprehensive scientific gathering on peripheral nerve biology and medicine. This year’s program will offer a full range of relevant discussions from leaders in the field, such as yourself. The program is designed to maximize the educational experience and networking opportunities for all attendees. They anticipate nearly 900 in attendance at the meeting this year. The 2024 PNS Annual Meeting will be held in Montréal, Canada at the Palais des Congrès de Montréal.
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The 10th annual congress of the European Academy of Neurology will take place in Helsinki, the capital of Finland, on 29 June – 2 July, 2024. a great opportunity for networking, learning, and sharing expertise. If you're planning to attend, be sure to register early and make your travel arrangements in advance to make the most of this prestigious event.
We will have a booth to represent EURO-NMD, It's a valuable opportunity to engage with attendees, share information about EURO-NMD's activities, and foster collaborations and partnerships with other professionals and organizations in the neurology community, more information to come!
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The "Inter-ERN Molecular Therapeutic Board in Neurological Channelopathies" represents an inter-ERN initiative, bringing together expertise from across the European Reference Networks (ERNs) dedicated to rare neurological (ERN-RND), neuromuscular (ERN EURO-NMD) and rare and complex epileptic diseases (EpiCARE). Designed to foster innovation and facilitate the exchange of knowledge, the Inter-ERN Board convenes regularly to discuss clinical cases of channelopathies that exhibit epileptic, neurological, or neuromuscular manifestations. These meetings serve as a dynamic forum where specialists from various disciplines contribute their insights, enhancing the depth and breadth of the discussions and eventually suggesting therapeutic options. To encourage broad participation, all clinicians are invited to submit cases for consideration through an accessible online form (link available below). This inclusive approach ensures a wide variety of cases are presented, providing ample opportunities for learning and collaboration among the experts involved.
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The Ottawa Hospital NeuroMuscular Centre is accepting applications for 1 or 2 year funded Neuromuscular / Clinical Neurophysiology (EMG) fellowships, to begin in July 2025. The fellowship program offers:
- 1:1 teaching sessions with 7 full-time and 3 part-time neuromuscular disease (NMD) specialists
- General NMD and EMG clinics, as well as subspecialty clinics (genetic neuromuscular clinic, myotonic dystrophy clinic,
myasthenia gravis clinic, multidisciplinary ALS clinic, peripheral nerve trauma clinic).
- Specialized techniques (e.g single-fibre EMG, interpretation of MRI in myopathies, ultrasound for neuromuscular conditions,
performing & interpreting muscle biopsies, etc).
- Many research opportunities including clinical research trials, quality improvement projects, translational research, and
observational studies.
- Fellows are actively involved in the education of neurology residents both in-clinic and through didactic teaching sessions.
Potential fellows may be encouraged to apply for the NMD4C fellowship if relevant (Annual Neuromuscular Postdoctoral Research and Clinical Fellowships Funding Competition Now Open - latest neuromuscular research updates
- NMD4C (neuromuscularnetwork.ca)) however separate funding also exists.
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Are you a doctor registered with the French National Medical Association (Conseil National de l'Ordre des Médecins), a general practitioner or a specialist, and would like to develop your skills in clinical research?
Located in Paris, at the heart of the largest hospital in Europe, La Pitié-Salpêtrière, the Institute of Myology was created in 1996 by AFM-Téléthon, an association of patients and parents of patients. Its aim is to promote the existence, recognition and development of myology as a clinical and scientific discipline in its own right. The Institute of Myology coordinates, medical care, fundamental research, applied research, clinical research and teaching, all patient-centered.
Come and join them at the Institute of Myology!
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