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It’s been a week already that we said good-bye to beautiful Porto, where we all enjoyed the fantastic Portuguese hospitality of Dr. Manuela A. Santos and Pr. Teresa Coelho. We would like to thank you all for your attendance and your precious contributions.
We were over 110 attendees, and we will remember our first dive into EURO-NMD’s Registry hub, thanks to the fantastic hands-on workshop organised by Dagmar Jäger and Adrian Tassoni! We heard great talks new therapeutic approaches in NMD and enjoyed the lively discussions on case examples. Not to mention the many parallel sessions of our Work Group meetings. Many will remember the “elevator fun” in Casa da Musica, and the musical surprise of the evening with Annelies who enchanted and charmed our ears with her beautiful voice. Looking forward to seeing you all again in 2024, on February 20th-24th in Paris 🇫🇷 ! Teresinha Evangelista and the EURO-NMD coordination team
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We are delighted to announce the next EURO-NMD Annual Meeting which will take place between February 20th and 24th, 2024 in Paris, France. We will soon announce which topics will be presented during this meeting.
We hope to see you all in Paris next year ! 🇫🇷
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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 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).
It also stresses how patients should play a role in each of 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 July 10-14, 2023 in Leiden University Medical Center, the Netherlands.
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February 2023
Thursday, January 16th - 16:00-17:00 Paris time
"Caveolae and Bin1 form ring-shaped platforms for T-tubule initiation" Delivered by Stéphane Vassilopoulos (Centre de Recherche en Myologie, INSERM, Paris, France).
Stéphane Vassilopoulos is "Directeur de Recherche" at the "Centre de Recherche en Myologie", the unit 974 of INSERM in Paris since 2021. He acquired the posts of Researcher in 2010 and Research Director in 2021.
He currently has a particular interest in Clarithrin and Caveolin. He will share some of his recent work that has potential clinical implications for managing these patients.
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March 2023
Thursday, March 9th - 16:00-17:00 Paris time
"Muscle hyperexcitability and cramps" Dr. Federica Montagnese, MD (University of Messina, Italy).
Dr. med. Federica Montagnese qualified as MD and Neurologist at the University of Messina, Italy. Since 2017, she works as post-doctoral fellow at the Friedrich-Baur Institute, Department of Neurology, Ludwig-Maximilian University Munich, Germany. Here, she obtained the certification as neurophysiologist and works in the neuromuscular outpatient clinic. Her main research interests focus on the clinical and myopathological aspects of metabolic myopathies, myositis, myotonic syndromes and muscular dystrophies.
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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 7 March 2023, 3-4pm CET
Towards precision medicine in NBIA by Manju Kurian (GOS Institute of Child Health, University College London, UK)
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In this webinar, Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus will overview what should be done at the very least before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.
📆 28 February 2023
⌚️12:00 - 13:00 CET
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The development of new therapeutic concepts for rare diseases and the understanding of the causes and mechanisms of neuromuscular diseases are the subject of numerous funding from the AFM-Téléthon through its annual calls for proposals. Each year, the Association supports more than 200 research projects and young researchers (doctoral and post-doctoral fellows). Funding requests must…
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The European Joint Programme on Rare Diseases launched on Dec 12th today the Joint Transnational Call 2023, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. This year’s topic is: “Natural History Studies addressing unmet needs in Rare Diseases”
The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients.
Pre-proposal submission deadline: February 15th, 2023
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ERN EURO-NMD SUPPORTS RARE DISEASE DAY ! Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Join the community ! Help us build awareness : Share your photos, videos and experiences! Find events near you.
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The 56th annual European Human Genetics Conference 2023 that will take place in Glasgow, Scotland, UK, from June 10 to 13th. The annual ESHG conference is the major scientific and professional event in human genetics which brings together European and international geneticists. Our field is developing extremely fast with important implications for basic science,…
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The 25th Summer School of Myology will take place at the Institute of Myology in Paris from June 12 to 16, 2023 in two ways: face-to-face, for 40 to 50 people, and online, on the same dates, for remote participants. The full face-to-face course will include five full days of instruction combining lectures and practical workshops. Internet users will benefit from three interactive sessions of 4 hours each on Monday afternoon, Wednesday afternoon, and Friday afternoon. One month before the start of the School and until September 15, 2023, all registrants (face-to-face or distance learning) will have online access to some sixty pre-registered courses. All registrations will be done on the AcadeMYO platform after validation of the requests by the Scientific Committee of the Summer School.
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The meeting will be held 17-20 June 2023. Their 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. Share your excitement about the PNS Annual Meeting using #PNS2023. Like us on Twitter and Facebook to receive regular meeting updates in your news feed.
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📆 7-8 March 2023
A FAIR Training Program will be available online to all those interested in understanding the value and future impact of the FAIR Guiding Principles. We invite all representatives of rare disease patient organizations, healthcare providers, researchers, funders, data stewards, or anyone interested in finding out more about how to make data Findable, Accessible, Interoperable and…
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RDiRC launches the Call for Members for the four new Task Forces of the 2023 Roadmap. Check out the newly approved Task Forces : - Funding Models to Support the Spectrum of Rare Disease Research and Development
The overall objective of this Task Force is to identify how different types of funders make decisions about when to fund at a given stage in a treatment’s development and the factors that contribute to this process...
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