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The entire EURO-NMD Coordination team is very grateful for your support during this year 2022. We wish you a happy holiday season and hope you will enjoy this special time of year. We look forward to sharing the mission and plans of ERN-EURO NMD with you in 2023. The EURO-NMD Coordination Team
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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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The official EC-evaluation process of the ERNs and their Full Members as per 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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Last month, the 4th edition of the Neuromuscular Translational School took place in Leiden, the Netherlands. This 5-day event was a huge success indeed. The students (researchers and clinicians) came from all over Europe, and had the chance to exchange with European experts in the field of neuromuscular diseases. This Neuromuscular Translational School contained 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).
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We have developed a satisfaction questionnaire to evaluate the quality of the lectures during this winter school. The results were excellent and the students all felt that the level of knowledge they acquired was excellent and very useful.
Stay tuned, we will inform you about the 2023 Neuromuscular Translational School very soon!
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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 Friday, December 23rd, and do not hesitate to share the survey with your colleagues : Thank you very much for your kind participation.
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Please check a recent publication from the members of our ERN on eBiomeMedicine from LANCET group, eBioMedicine is an internationally trusted source of biomedical science and translational medicine knowledge. : "Comprehensive morphometric assessment of deltoid muscle development in children: A cross-sectional study"
Congratulations to our Coordinator Dr. Teresinha Evangelista and the members of her lab.
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DECEMBER 2022
Thursday, December 22nd - 16:00-17:00 Paris time
"Dysphagia in Neuromuscular Diseases" Delivered by Prof. Marianne de Visser (Academic Medical Centre, Amsterdam, NL). Marianne has been the leader of the neuromuscular group at the Academic Medical Centre in Amsterdam in the Netherlands for more than 20 years. During this time her group has contributed to research on muscular dystrophies, myositis, motor neuron diseases and hereditary neuropathies. She and others have initiated and implemented the core curriculum on neuromuscular disorders for neurologists in The Netherlands.
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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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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. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
📆 February, 28th, 2023 - All around the world !
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In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center. The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands. Registration is open here, and closes on February 1st. The workshop is open to all research levels and aims to to raise awareness for the psychosocial impact of having a rare disease and will train a group of researchers in the mental well-being and social sciences domain for rare diseases.
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For the 9th annual congress of the European Academy of Neurology we will be travelling to the grand and beautiful city of Budapest 🇭🇺 on 1-4 July, 2023. As always, the EAN Congress will provide an unrivalled chance for our community to share a rewarding clinical and scientific experience. With the rich cultural tapestry of Budapest as a backdrop, they also have the ideal environment for establishing new contacts and friendships, and of course renewing old ones. Abstract submission deadline: 12 January 2023, 23:59 CET
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EURO-NMD is now on LinkedIn, don't hesitate to follow us on this new social network, we will also share lots of news.
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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. Don’t miss out on the information webinar which will be held on December 15th for potential applicants.
Register here.
Try the matchmaking tool to help you find your ideal project partner! (Under the tab Consortium makeup)
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We are delighted to introduce to you the European Society for Mitochondrial Research and Medicine (E-Mit) reachable at https://www.e-mit.org/. The aim of the society is to promote research in mitochondrial biology and medicine in Europe, and to be a reference and voice for mitochondrial research both here and abroad.
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A state-of-the-art, on-demand CME course for clinicians involved with the diagnosis and management of care for patients with facioscapulohumeral muscular dystrophy (FSHD) was made available on demand by the FSHD Society for a fee (50 dollars per person). The course will present information on the latest in diagnosis, genetic counseling and testing, natural history, symptom…
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The Czech Presidency of the EU Council organised the Expert Conference on Rare Diseases in Prague on 25-26 October 2022 to explore how the European Union can take continued steps towards a coordinated strategy for rare diseases to better addresses current unmet needs by setting meaningful goals for patients, families and for society at large,…
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