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We are excited to announce that ERN EURO-NMD is recruiting a Project Officer to join our dynamic team. This is a unique opportunity to contribute to the improvement of diagnosis and care for patients with rare neuromuscular diseases across Europe. This role will involve supporting the network’s activities and initiatives to improve the diagnosis and care of patients with rare neuromuscular diseases across Europe. As a Project Officer, you will play a crucial role in coordinating and managing various aspects of our projects within the network. This position involves facilitating communication and collaboration among network members, monitoring project progress, supporting new initiatives, and organizing meetings and events. Location: Paris, France More Info: See the full Job Offer here!
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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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Joachim Weis (Institute of Neuropathology, RWTH Aachen University Hospital, Aachen, Germany and Committee Member of ERN EURO-NMD Neuromuscular Pathology Working Group) and Jean-Michel Vallat (Department of Neurology, National Reference Center for Rare Peripheral Neuropathies, University Hospital (CHU Dupuytren), Limoges, France) are noted experts in the field of neuropathology, particularly concerning the diagnosis of peripheral neuropathies through nerve biopsies. Their work focuses on the diagnostic utility, methodologies, and limitations of this procedure in identifying various peripheral nerve disorders.
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We are delighted to introduce our newly redesigned website, tailored specifically for the neuromuscular disease community. Our aim is to provide a comprehensive resource for patients, families, healthcare professionals, and researchers, making it easier to access critical information, support, and the latest developments in the field. This development is underway and will be up and running in no time! Some functions no longer work on the website as we are currently migrating data.
Stay tuned, new things are coming...
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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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September 2024
Tuesday 3 September 2024 16:00-17:00 CEST
"The ERN EURO-NMD Registry Hub Project" delivered by Nawel Lalout (Radboudumc, The Netherlands) & Dagmar Wandrei (Medical Center – University of Freiburg, Germany) with the participation of Prof. Michelangelo Mancuso (University of Pisa, Italy), Carla D'Angelo (Pitié Salpêtrière Hospital, France) & Dimitrios Athanasiou (World Duchenne Organization (WDO), Greece)
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We are also excited to announce a series of insightful webinars in honor of Mitochondrial Disease Awareness Month this September. Our webinars aim to educate, inspire, and connect individuals interested in learning more about mitochondrial diseases, the latest research, and ways to support those affected.
Here is the programme:
Friday 6 September 2024 16:00-17:00 CEST
"Cell models and innovative therapies in mitochondrial disorders" delivered by Prof. Valerio Carelli (University of Bologna (UNIBO) - Department of Biomedical and Neuromotor Sciences)
Thursday 12 September 2024 16:00-17:00 CEST
"Therapies for inherited optic neuropathies–an update" delivered by Prof. Patrick Yu-Wai-Man (Department of Clinical Neurosciences, University of Cambridge, UK)
Thursday 19 September 2024 16:00-17:00 CEST "PMDs and pregnancy" delivered by Prof. Mika Martikainen (Professor of Neurology, University of Oulu and Chief Physician, Neurology, Oulu University Hospital, Finland)
Thursday 26 September 2024 16:00-17:00 CEST
"Melas and Melas-spectrum: clinical findings and therapeutic options" delivered by Prof. Serenella Servidei (Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Italy)
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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 World Duchenne Awareness Day 2024 theme is ‘Raise your voice for Duchenne’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this year’s theme, WDAD supports creating a society that provides equal opportunities for all. This year they organize the 11th edition. This year’s theme emphasizes the importance of amplifying voices to advocate for the rights, inclusion and well-being of people living with Duchenne muscular dystrophy (DMD) and other dystrophinopathies. Read their press release here!
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The World Muscle Society is a dynamic community that aims to promote, disseminate, and share all aspects of neuromuscular physiology and diseases, from basic science to patient care. It encompasses a broad range of scientists and healthcare professionals who share the common interest for neuromuscular disorders. The 29th Annual World Muscle Society Congress will be held in the beautiful city of Prague from October 8 to 12, 2024. The congress will once again be a hybrid event, offering the flexibility of virtual participation, but please feel free to attend in person to maximize the benefits of networking and scientific exchange. For this congress, they have chosen a theme centered on acquired myopathies. They hope this theme will broaden the traditional focus on inherited muscle diseases and bring new experts into our field of myopathies.
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Skeletal muscle plays a crucial role in human health at every stage of the life, from embryonic development to postnatal maturation, throughout adult life, and during the aging process.
This EMBO Workshop will present and discuss the latest, cutting-edge, unpublished data on topics at the forefront of skeletal muscle biology research, including skeletal muscle development, homeostasis, metabolism, regeneration, and diseases.
This EMBO Workshop takes place in beautiful Catania, Italy at the height of autumn, close to Mount Etna, near the historical districts, and on the gorgeous Italian beaches.
📍 Catania, Sicily, Italy
📆 12 – 17 October 2024
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The European Commission has published guidance on the clinical evaluation of orphan medical devices. Orphan devices are medical devices or their accessories, which are intended to be used for diseases or conditions affecting only a small number of individuals each year. Often, they are used to treat a rare disease or medical condition for which very few diagnostic or therapeutic options exist. Orphan devices can be crucial to fulfil an otherwise unmet medical need. Today’s guidance provides criteria for determining when a medical device or an accessory for a medical device should be regarded as ‘orphan device’ under the Medical Devices Regulation 2017/745 (MDR). It aims to guide manufacturers and notified bodies when applying the MDR’s clinical evidence requirements and help overcome some of the challenges that lead to delays in patient access to orphan devices. The guidance includes the possibility for manufacturers and notified bodies to seek advice from European Medicines Agency expert panels on the orphan device status and the clinical data needed for their clinical evaluation.
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JARDIN is a Joint Action (JA) created to achieve the integration of European Reference Networks (ERNs) into National Healthcare Systems. JARDIN's mission and vision are based on "Integration, equity and sustainability". JARDIN was born with the aim to grow as a bridge between ERNs and national health systems. The vision is to put people living with rare diseases or complex conditions at the centre of care, and aims to make the care pathway clear and easily accessible.
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HaDEA has published new calls for proposals under Cluster 1 'Health' of Horizon Europe: The deadline for applications for topic 09-01 is 25 September 2024, 17:00 (CEST). The deadline for applications for the other topics is 26 November 2024, 17:00 (CET). For more information about these, re-watch the dedicated info day that took place on 28 May.
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The ERICA 4th General Assembly & ERN Research Conference will take place from December 11th to December 13th, 2024 in Udine, Italy. Hosted by MetabERN. The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. ERICA Conference serves as a great opportunity to ‘meet and greet’ the active ERN research community, to present the research projects involving ERNs and to discuss the future of the ERN related Research. We call all the stakeholders to think What is ERN research or what should be typical ERN research? We aim to define a corporate identity of ERN Research and to set the standards for the future RD Programs and the Clinical Research Network. With special attention to new ‘raising stars’ in ERN Research, who we encourage to reply to the Call and submit their Abstracts. Best ones will get the opportunity to present their posters during the conference, with the possibility to write a paper that will be published in an extra Supplemental issue of Current and Future of ERN Research in Orphanet Journal of Rare Diseases. Deadline submission 1st October 2024.
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