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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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ERN EURO-NMD has produced a series of educational videos on rare peripheral neuropathies to raise awareness, primarily among general practitioners, who as first line professionals play a decisive role in patient care. Rapid referral to a specialist in an expert centre will often reduce diagnosis wandering and, in some cases, enable appropriate and early treatment limiting the worsening of the disease and improving patients’ quality of life.
These videos are also directed towards patients and their representatives, with the aim of providing them with as much information, recommendations, and good practice as possible.
This work contains patient testimonials and explanations from expert clinicians in the field of rare peripheral neuropathies, who provide detailed information about the care and treatment options available to patients.
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The Mitochondrial Disorders Course is a joint initiative of the European Reference Networks EURO-NMD (Rare Neuromuscular Disorders), ERN-RND (Rare Neurological Disorders) and ERN EpiCARE (Rare Epilepsies).
This course comprises six modules dedicated to filling a gap in post-graduate education on Mitochondrial Disorders. The latter may arise from the complexity of Mitochondrial Disorders articulated with the multidisciplinary approach to their manifestations and treatment.
As a consequence, education about mitochondrial disorders suffers from the fragmentation of their multisystemic nature across diverse medical areas, raising the need for a holistic vision of these patient’s conditions.The current course brings together the perspectives of different neurological areas for the care of neurological and neuromuscular presentations of these patients.
Welcome to the EURO-NMD Academy: Where Neuromuscular Disorders Education is Revolutionized! Our cutting-edge platform, powered by the renowned Moodle Learning Management System (LMS), empowers you to stay ahead in your practice. Designed by leading experts, our immersive online courses are perfect for medical professionals, students, and researchers looking to enhance their knowledge and skills.
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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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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.
Tuesday 14 May 2024, 16:00 – 17:00 CEST Episode 4: “N-of-1 to many personalized therapies” by Terry Pirovolakis (Founder of CureSPG50 and Elpida Therapeutics)
Click here to register!
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You can also register for episode 6 & 8* now:
Wednesday 29 May 2024, 16:00 – 17:00 CEST Episode 6: “Genetic therapies and therapy developments for muscular dystrophies (DMD, LGMD)” by Prof. Dr. Annemieke Aartsma-Rus (Leiden University Medical Center, the Netherlands) Click here to register!
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!
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Click here fore more information on the other episode of the series and to see the full schedule!
*FYI: Episodes 5 and 7 are not yet organized but will be very soon, so stay tuned!
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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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04 June 2024, 3 - 4 pm CET
Genetic Testing in Ataxias and HSP - in whom, when and how Delivered by Rebecca Schüle, Ludger Schöls (University Hospital Heidelberg & University Hospital Tübingen, Germany)
25 June 2024, 3 - 4 pm CET
Autoimmune parkinsonism Delivered by Jeroen Kerstens (Antwerp University Hospital, Belgium)
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The 12th edition of the European Conference on Rare Diseases and Orphan Products (ECRD), for which EJP RD is a partner, will take place on 15-16 May 2024, both online and in Brussels! It will be held as an official event under the auspices of the Belgian EU Council Presidency. ECRD is the largest patient-led, rare disease policy-shaping event held in Europe, aimed at identifying key priorities to forge a unified approach for the next EU legislative cycle.
The in-person registration is sold out but it's still time to register online! Register now !
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The 57th annual European Human Genetics Conference will take place in Berlin, Germany from Saturday June 1 to Tuesday June 4, 2024. The ESHG conference provides a platform for the dissemination of the most recent advancements in the field of human genetics, both scientifically and technologically. It also fosters the education of the upcoming generation of human geneticists. The scientific program reflects this broad scope, inviting the best speakers for the invited talks and concurrent symposia, selecting the best abstracts for oral presentations, completed by poster presentations and a set of educational sessions. The conference is a unique opportunity to meet, share results, build scientific projects and collaborations and get inspired, whatever your professional background in human genetics.
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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 RYR-1 Foundation is Requesting Letters of Intent (LOI) for the Individual Investigator Research Grant Awards
Deadline: May 18, 2024 In celebration of Rare Disease Day, The RYR-1 Foundation is excited to announce that Letters of Intent (LOIs) for the Individual Investigator Research Grant Awards are open for submission on ProposalCentral. The Individual Investigator Research Grants will be awarded in early 2025. LOIs are due by May 18, 2024. You will be notified of your status by June 1, 2024. For any additional questions please contact Patricia Raffaele at patricia@ryr1.org. The final deadline for full grant applications is October 19, 2024. |
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The Joint Action JARDIN is a project that is integrating the ERNs into national health systems and working to make them sustainable. It develops national patient pathways linked to ERNs, national reference networks mirroring and complementing the ERNs, and structures for undiagnosed patients.
The project involves the 27 EU Member States, Norway and Ukraine. It is coordinated by Austria and has total funding of EUR 18.75 million (EUR 15 million from the EU and EUR 3.75 million from the Member States) for a period of three years.
The results expected from JARDIN, including recommendations, blueprints and reports from concrete pilot projects, should lead to better national plans for rare diseases in EU Member States. JARDIN will therefore play a key policy role in the future development of ERNs and in the diagnosis, treatment and care of rare diseases.
To achieve this goal, the commitment of civil society organisations, in particular rare disease patient associations from across the EU, is key. Their involvement has been instrumental in the progress made so far, and their voice must continue to be heard in the next steps to be taken at EU level as part of the dialogue which has been become a reality thanks to the EESC's proposals.
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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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