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The 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 School contains lectures about the current state of the art of acquired and genetic neuromuscular diseases, the different steps of drug development and the tools needed for this (outcome measures, biomarkers etc.). It also stresses how patients should play a role in these steps and teaches how to communicate research to patients and the general public during interactive workshop sessions. The Translational School will take place in autumn this year from November 21-25 in Leiden University Medical Center, the Netherlands.Places are limited for maximum interaction. Participants accommodation and meals are covered by the organisers.
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Following the ERN's motto: "knowledge travels, not the patient" we are pleased to announce that the European Commission is funding an Exchange Training Programme. Through this programme your travel costs will be financed, and you will receive a daily allowance of 200€ per working day for your accommodation, travel insurance and subsistence costs. This Exchange Programme foresees 5 training days in another facility of the network which can be extended up to six weeks. The target population for this programme are healthcare professionals from ERN Euro-NMD, and in specific cases, patient representatives. Here is how it works:
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To ensure equity of care for patients with rare neuromuscular diseases across Europe, the ERN EURO-NMD is strongly committed to boost continuous Training and Education Programmes. Our bursary scheme is open to young researchers/clinicians under the age of 40 years old that belong to one of the 84 EURO-NMD healthcare providers. We will support 3 young clinicians/researchers of the network by granting 3 bursaries of 500,-€, for the participation (talk/poster) at a neuromuscular congress, such as EAN, PNS, ESHG, WMS, etc. You are under 40 years old and interested?
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In partnership with ERN-RND, ERN Epicare and EAN, we are pleased to announce that we will be participating in the World Mitochondrial Awareness Week 2022 with a series of educational webinars delivered by experts. Registrations are open:
Wed September 21st 16:00-17:00 Paris time Mitochondrial Movement Disorders
Thurs September 22st 16:00-17:00 Paris time Mitochondrial Genetics
Thu September 29th 16:00-17:00 Paris time Mitochondrial Optical Neuropathies
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If you missed a webinar, don't panic! We record all our webinars and they are available on our website. |
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Tuesday 13 September 2022, 3-4pm CEST
Vanishing white matter by Marjo van der Knaap
The speaker is Full Professor of Pediatric Neurology and head of the research group 'white matter diseases in children' at the Amsterdam University Medical Center in the Netherlands.
Tuesday 20 September 2022, 3-4pm CEST
Tau-targeting Therapies: Where are we heading to ? by Günter Höglinger
The speaker is Full Professor and Director of the Department of Neurology at the Hannover Medical School, Germany. He is also a research group leader at DZNE (German Center for Neurodegenerative Diseases) in Munich. He conducts research in the field of neurodegenerative Parkinson syndromes with the goal of understanding the molecular mechanisms leading to the development and progression of neuronal dysfunction and death and of using these findings for diagnostic and therapeutic purposes. His particular focus is the interface between preclinical and clinical research.
Tuesday 27 September 2022, 3-4pm CEST
Clinical and genetic predictors of subthalamic nucleus deep brain stimulation in Parkinson's disease by Daniel WeiĂź
The speaker is Professor at the University of TĂĽbingen and leads the working group on deep brain stimulation at the Hertie Institute for Clinical Brain Research in TĂĽbingen, Germany.
Tuesday 4 October 2022, 3-4 pm CEST
CACNA1A-related disorders: clinical presentation and therapeutic options​
by Elisabeta Indelicato
The speaker is Neurologist at the University Hospital Insbruck, Austria.
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AFM-Telethon is pleased to announce that it will hold its 7th International Myology Congress in person, from September 12th to 15th, 2022 at the Nice Acropolis Congress Center, followed by mitoNice from September 15th to 17th, an international congress dedicated to Mitochondrial Medicine. A joint session in the afternoon of September 15th will ensure a smooth transition between the two congresses.
ERN EURO-NMD will have a booth. MEET US at Booth 18 in the Rhodes Exhibition Hall !
We look forward to seeing you there !
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The 15th Congress of the European Paediatric Neurology Society (EPNS) will take place on 20-24 June 2023 in the Congress Center Prague. The main highlight of the congress is “From genome and connectome to cure”. They invite us to see how the latest trends in understanding pathophysiology of neurological diseases are being implemented in clinical practice. Their field has traditionally focused on precise diagnostics; however, curative treatments were unavailable for a long time. Today, this trend is changing rapidly and novel therapeutic options in our field have brought hope to many families of children even with the most severe neurological conditions.
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The conference is hybrid with both face-to-face and online participation (online participation will be possible only for October 7 and 8). The scientific sessions will be entirely in English to facilitate the participation of doctors and researchers from all over the world, promoting international exchange and collaboration, crucial to fight together against mitochondrial diseases. Simultaneous translation into Italian will be provided.
📆 October 7, 8 & 9
đź“ŤRoma, Italy
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Since the latest international standards of care for Duchenne Muscular Dystrophy (DMD) were published in 2018, which prompted greater emphasis on regular vertebral fracture monitoring and early treatment of bone morbidity, the landscape of DMD care has changed. This symposium aims to review the evidence base that informed the 2018 international standards of care, best practices for implementation of these care considerations, and emerging knowledge that has arisen from research in the past two years. The overall aim of this dialogue is to identify barriers to implementation of these “minimum standards of bone health care” worldwide, and to discuss future strategies that will move the dial on optimal management to foster bone strength and prevent fractures in this setting. – Thursday 3rd November 2022 (17:00-20:00 GMT)
– Monday 14th November 2022 (17:00-20:00 GMT)
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The European Joint Programme on Rare Diseases (EJP RD) is glad to announce that the last round for the Research Mobility Fellowships funding opportunity will open on October, 3rd, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence. More information here.
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Duchenne Parent Project and European Reference Network for Neuromuscular Diseases can now begin leveraging their FAIR data to benefit People Living With Rare Diseases. Veenendaal, September 1st, 2022 | Joint Press Release: The Duchenne Parent Project, ERN EURO-NMD and FAIR Data Systems S.L. are proud to announce that with other collaborators they have made an important step in solving the long-standing obstacle of how to conduct queries between rare disease FAIR data registries without exposing sensitive patient details. That is, how to leverage the value of FAIR interoperability while simultaneously protecting patient privacy. The solution is based on technology that connects Web addresses to database queries, thus limiting database exploration to only pre-approved questions. It is available in the form of a publicly accessible demonstration prototype running in the Jupyter data analytics environment.
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