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The EURO-NMD Coordination Team wants to thank you for your support throughout this year and wishes you a very happy holiday season. We hope you enjoy this special time of the year and look forward to share the ERN-Euro NMD mission and projects with you in 2022. Take care of yourself The EURO NMD Coordination Team
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EURO-NMD webinars in association with ERN-RND and the European Academy of Neurology
Our three entities have agreed to build a joint webinar programme where the partners would kick-start the thematics closer to their higher expertise. By selecting high-quality scientists and clinicians with a concomitant reputation as communicators, the alliance has come up with well-attended, content-laden webinar communications followed by a discussion with the audience, resulting in highly-motivating teaching tools. As it would be expectable, EURO-NMD triggered webinars dedicated to Neuromuscular Disorders. Since April 2019, our ERN has produced and published 29 webinars on EURO-NMD's website and a dedicated YouTube channel. The complete list of all webinars is available both on our website and ERN-RND's website.
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UPCOMING 2022 WEBINARS
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JANUARY 2022 Thursday Jan 27th – 16:00-17:00 Paris time “Childhood onset Charcot-Marie-Tooth disease” Delivered by Isabella Moroni Fondazione IRCCS Istituto Neurologico Carlo Besta, working in Child Neurology – Department of Pediatric Neurosciences.
FEBRUARY 2022
Thursday Feb 3rd – 16:00-17:00 Paris time
“An introduction into mitochondrial diseases in adulthood” Delivered by Cornelia Kornblum, senior neurologist and head of the neuromuscular group of the University Hospital Bonn.
Thursday Feb 17th – 16:00-17:00 Paris time
"Primary mitochondrial myopathies" Delivered by Michelangelo Mancuso Neurologist at the Neurological Clinic of Cisanello Hospital and Associate Professor of Neurology at the University of Pisa.
Thursday Feb 24th – 16:00-17:00 Paris time
"Targeted Therapies for Leigh Syndrome: Systematic Review and Steps Towards a “Treatabolome” Delivered by Rita Horvath Director of Research (Clinical) at the Department of Clinical Neurosciences, University of Cambridge.
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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 11 January 2022, 3-4pm CET
Anti-spastic therapies in Hereditary Spastic Paraplegia by Marcondes C. França Jr. The speaker is Neurologist at the Department of Neurology and Associate Professor at the School of Medical Sciences, University Campinas (UNICAMP), Brasil.
Tuesday 25 January 2022, 3-4pm CET
ASO RNA splice modulating therapies for genetic brain disorders by Willeke van Roon-Mom The speaker is a full professor of Human Genetics, in particular of translational studies of neurodegenerative disorders at the University of Leiden, the Netherlands.
Tuesday 1 February 2022, 3-4pm CET
Learning by example: HD-JUNIOR a national registry for patients with juvenile onset Huntington's Disease by Hannah Bakels The speaker works as a research physician and PhD-candidate at the Neurology and Human Genetics department of the Leiden University Medical Center.
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The 8th EAN Congress is an European meeting that brings together neurologists and neuroscientists with the aim of networking and exchanging knowledge to address the biggest challenges in neurology. They have planned a meeting with a pan-European flavor, celebrating the opportunity to meet once more in person in a hybrid meeting that will also maximise virtual participation. It will take place on June 25 to 28, 2022 in Vienna, Austria! The abstract submission deadline is January 12, 2022 (23:59 CET). Please note, all presenters of accepted abstracts must be registered for the congress.
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A hybrid workshop on “contemporary outcome measures in neuromuscular diseases” aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice. The hybrid event (in-person on site and online by videoconference) will take place over two days on March 4th – 5th, 2022 at the University Hospital Nice, Pasteur 2 Hospital in Galet, Nice, France.
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The 2022 European Paediatric Neurology Society Congress will be dedicated to “Precision in Child Neurology” in Glasgow, UK from the 28th April to the 2nd May 2022. The EPNS Congress provides an opportunity to learn about the latest developments in the rapidly evolving field of child neurology, including basic science, diagnostic methods, and novel treatments.…
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The TREAT-NMD Alliance are organising our 7th international conference focussing on translational medicine in inherited neuromuscular diseases to be held from 15th to 17th June 2022 in Vancouver in Canada.
The aim of this international conference will be to share progress and lessons learned in the area of translational medicine in inherited neuromuscular diseases and…
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The imaging group regular meetings take place every 2 months. In these meetings, you have the opportunity to discuss interesting cases with different experts. If you want to discuss a case, please submit it to Pierre Carlier (pierre.carlier@cea.fr) before January 28, 2022. Register for the next meeting that will take place Tuesday, February 8, 2022 at 5PM CET.
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The 3rd Neuromuscular Translational Summer School took place online from 6 to 10 December, 2021. The aim was to understand how to facilitate the clinical development of therapies for NMDs. The objectives of this Summer School were: – To educate clinicians and researchers working in the NMD field on aspects relevant for translational therapy development – To outline and showcase how networks like EURO-NMD and TREAT-NMD facilitate therapy development This 3rd Neuromuscular Translational Summer School was a success despite the fact that it had to be reorganized online and the participants gave us very positive feedback.
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The French Muscular Dystrophy Association (AFM) funds research projects on neuromuscular genetic diseases (myopathies, Steinert’s myotonic dystrophy) mainly, but also on other rare genetic diseases.
AFM-Téléthon supports the Proposals after review either by its Scientific Council or by Experts Committees :
- Medical research call for proposals in Neuromuscular Disorders
- Scientific Call for Proposals AFM-TELETHON 2022
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The European Joint Programme on Rare Diseases just pre-announced the Joint Transnational Call 2022, 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.
The aim of the funding opportunity is to enable scientists in different countries to build…
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COVID-19 and people with neuromuscular disorders : Updated 3rd December 2021 The WMS (World Muscle Society has provided advice for people with neuromuscular disorders, and their healthcare providers since the start of the COVID-19 pandemic. This is a document aiming to answer questions regarding vaccines and vaccination against Coronavirus SARS-CoV2 asked by people with neuromuscular…
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The European Patient Advocacy Groups (ePAGs) meeting took place online on 4 & 5 November 2021 and has laid out the sketch of a permanent framework of patients and clinicians involvement that incorporates patient involvement into the normal operation of the ERNs. EURO-NMD has participated and contributed to those conclusions. You can read the report below.
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