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Happy New year ! The ERN EURO-NMD coordination team wishes you all the best for 2023, a year that already looks to be very promising ! Thank you for your continued support, we look forward to further collaboration and networking with you all.
The EURO-NMD Coordination Team
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The official EC-evaluation process of the ERNs and their Full Members as per the Commission implementing decision 2014/287/EU Art. 14-15 started officially on November 9th, 2022. The Implementing Decision 2014/287/EU requires that an Evaluation Body appointed by the Commission – the Independent Evaluation Body (IEB), should evaluate the Networks and their Full Members every five years…
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DEADLINE EXTENDED ‼️
Dear clinicians, recently, several European Reference Networks for rare or low prevalence diseases (ERNs) decided to join forces. They created a joint work group dedicated to mitochondrial diseases, comprised of experts on Rare Neurological Diseases (ERN RND), Neuromuscular Diseases (ERN EURO-NMD), Rare and Complex Epilepsies (EpiCARE), Eye Diseases (ERN-EYE), Hereditary Metabolic Disorders (MetabERN), and by patient representatives. Today, these experts call on you and your experience from everyday clinics, to get a clear picture on how mitochondrial diseases are managed throughout Europe. Please do help us to achieve maximum input from clinicians, by answering the survey, if possible before January 21st, and do not hesitate to share the survey with your colleagues : Thank you very much for your kind participation.
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We are delighted to announce the next EURO-NMD Annual Meeting will take place on February 2nd and 3rd, 2023 in Porto, Portugal. The overarching theme will be “The latest therapeutical approaches in neuromuscular diseases”. We would like to kindly remind you that board member participation is mandatory.
We hope to see you all in Porto ! 🇵🇹
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JANUARY 2023
Thursday, January 26th - 16:00-17:00 Paris time
"Proximal weakness" Delivered by Prof. Kristl Claeys (University Hospitals Leuven, Belgium).
Kristl Claeys, MD, PhD, is a neurologist specialised in neuromuscular disorders working at the University Hospitals Leuven, Belgium. In Leuven, she is affiliated with the largest Neuromuscular Reference Centre in Belgium, together with her colleague and neuromuscular neurologist Philip Van Damme. Kristl Claeys is appointed as associate Professor at the University of Leuven (KU Leuven)
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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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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.
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First European Workshop on interdisciplinary perspectives for rare genetic Neurodevelopmental Disorders. The EU Reference Network ITHACA announces the first 2-day European workshop on the multifaceted care and research of genetic neurodevelopmental disorders. This meeting will be fully supported by the European Union to enhance cross-border and multidisciplinary knowledge exchange and collaboration.…
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Coming soon, the 7th RE(ACT) Congress and 5th IRDiRC Conference will be held in person in Berlin, Germany 🇩🇪 from March 15th – 18th, 2023. The joint event “RE(ACT) Congress and IRDiRC Conference 2023” aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Patients and patient organizations committed to research will also be in attendance to share their experiences and perspectives. The RE(ACT) Congress and IRDiRC Conference 2023 represents an exciting program with outstanding speakers and an in-person event with multiple networking opportunities!
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The next in our series of free masterclasses will take place online on 9th and 10th March 2023. This fantastic event is aimed at healthcare professionals based in North America who are involved in the treatment and care of patients with LGMD. Expert speakers will give informative talks on topics ranging from diagnosis to latest…
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Congratulations to Teresinha Evangelista, our coordinator, for starting a new position as member of the Executive Board of the World Muscle Society. Together, they will lead the WMS for the next three years.
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Few weeks ago, EURORDIS has announced the opening of photo submissions for the Photo Award 2023.
HURRY UP! The Annual Photo Award will close soon, on 22nd January 2023 at 23:59 CET.
The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The EURORDIS Black Pearl Awards takes place in February, marking Rare Disease Day.
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