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The Neuropathies Rehabilitation Summer School, held under the auspices of ERN EURO-NMD, is a specialized event designed for physiotherapists, occupational therapists, clinicians with an interest in neuromuscular diseases, clinicians specializing in rehabilitation medicine, and patient advocacy groups. The primary objective of this summer school is to disseminate knowledge about current and future modalities of rehabilitation in rare and complex neuropathies. The Neuropathies Rehabilitation Summer School will take place from September 18-21, 2023 in Hotel Excel Roma Montemario, Rome, Italy.
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ERN EURO-NMD has produced a series of educational videos on rare peripheral neuropathies to raise awareness, primarily among general practitioners, who as first line professionals play a decisive role in patient care. Rapid referral to a specialist in an expert centre will often reduce diagnosis wandering and, in some cases, enable appropriate and early treatment limiting the worsening of the disease and improving patients’ quality of life.
These videos are also directed towards patients and their representatives, with the aim of providing them with as much information, recommendations, and good practice as possible.
This work contains patient testimonials and explanations from expert clinicians in the field of rare peripheral neuropathies, who provide detailed information about the care and treatment options available to patients.
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Dear EURO-NMD board representatives, affiliated partners and executive committee members, On behalf of Teresinha Evangelista and the Paris coordination team, it’s a great pleasure to invite you to our next online board meeting - Wednesday, September 20th, 17-19h CET
We will present the work packages of the new grant for years 2023-2027, and give a feedback on the EU’s five-years-evaluation process and outcomes. The detailed agenda and the zoom link will follow closer to the date. Please remember that participation in the board meeting is mandatory for Board members (you may be represented).
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The 5th Neuromuscular Translational summer school, co-organised by EURO-NMD and TREAT-NMD, took place on 10-14 July in Leiden, Netherlands.
The programme aims to educate clinicians and researchers working in the field of neuromuscular diseases on various aspects of translational therapy development, such as clinical trials, outcome measures development, industry perspective, and patient engagement.
This year's edition gathered a very smart group of students with diverse backgrounds, and it was really interesting to hear their experiences and perspectives on the different topics covered!
Keep an eye out for future editions by subscribing to our newsletter and following us on social medias!
Youtube
Twitter
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The 15th Congress of the European Paediatric Neurology Society (EPNS) took place on 20-24 June 2023 in Prague, Czech Republic. The main theme of the congress was “From genome and connectome to cure”.
Over 2,000 registered attendees visited the congress, making for a great occasion to present the ERN and connect with people from all around Europe.
We shared the booth with 3 other ERNs: MetabERN, EpiCARE and Ithaca. It was a very successful congress and we are looking forward to participating to next year's edition, which will take place from 8 – 12 July 2025 in Munich, Germany!
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Prof. Anna Kostera-Pruszczyk gave us a full review of the event, which took place last June and was endorsed by EURO-NMD:
"On 2-3rd June 2023, Warsaw Spring School of Neuromuscular Disorders” was held in the capital of Poland. The educational conference was supported by Scientific Panel for Muscle and Neuromuscular Junction Disorders of the European Academy of Neurology and European Reference Network for Neuromuscular Disease ERN EURO-NMD.
Two day event gathered 185 participants from Poland, Czech Republic and Ukraine. Expert international lecturers provided insight on the state-of-the-art diagnosis and treatment of neuromuscular diseases (see attached program of the conference).
The conference received very high positive opinions from the participants. The official language was English, simultaneous translation was provided.
We thank You for support of the conference, excellent lectures and opportunity of networking, and we look forward to hosting future neuromuscular events in Poland."
We are looking forward to the next edition!
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Child and adult neurologists from 4 European Reference Networks (MetabERN, ERN-RND, ERN EpiCARE, and EURO-NMD), Experts from the UK and Patient Avocates gathered in Budapest, Hungary to write a consensus paper on management of seizures in mitochondrial diseases patients. This paper adresses an unmet need strongly expressed by patients and treating clinicians. Imminent epileptogists and mitochondrial experts from 6 countries discussed clinical evidence and their clinical experience over two days, and used the Delphi process to reach consensus on 25 drugs.
The consensus paper is funded by EURO-NMD and EJPRD.
The work on the consensus paper was led and coordinated by Prof. Michelangelo Mancuso from Pisa, Italy.
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Please note that there will be no webinars in August.
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September 2023
Thursday, Sept 14th - 16:00-17:00 CEST
"Mitochondrial Myopathies" delivered by Prof. Dr. Anders Oldfors (University of Gothenburg and Sahlgrenska University Hospital, Sweden)
Anders Oldfors studied medicine in Gothenburg, Sweden between 1969 and 1975. After his PhD thesis in 1980 he did a post doc with Michel Fardeau in Paris, 1981. His interest in muscle pathology has led to authorship of chapters in several books on muscle diseases as well as authorship of the 4th and 5th editions of the book “Muscle Pathology- a practical approach” (by Dubowitz, Sewry and Oldfors). As of January 2023 he has co-authored 287 articles listed in PubMed with an h-index of 67 (Google Scholars). At present he is senior professor at the University of Gothenburg and consultant pathologist at the Sahlgrenska University Hospital.
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October 2023
In October, the Peripheral Nerve Diseases Working Group, led by Dr. Davide Pareyson, is organizing a series of webinars. Do not miss this opportunity to discuss live with the experts!
Thursday, October 4th - 16:00-17:00 CEST
"Pathomechanisms of Charcot-Marie-Tooth" delivered by Dr. Stefano Carlo Previtali (IRCCS Ospedale San Raffaele, Italy)
Thursday, October 12th - 16:00-17:00 CEST
"Treatment of Charcot-Marie-Tooth" delivered by Dr. Davide Pareyson (Fondazione IRCCS, Istituto Neurologico C.Besta, Italy)
Thursday, October 19th - 16:00-17:00 CEST
"Gene Therapy" delivered by Prof. Dr. Kleopas A. Kleopa (The Cyprus Institute of Neurology and Genetics (CING), Cyprus)
Thursday, October 26th - 16:00-17:00 CEST
"Diagnosis of Charcot-Marie-Tooth Disease" delivered by Prof. Dr. Shahram Attarian (CHU de Marseille – Hôpital de la Timone, France)
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If you missed a webinar, don't panic! All our webinars are recorded and made available on our website. |
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12. September 2023, 3 - 4 pm CET
Friedreich Ataxia by Kathrin Reetz (University Hospital Leipzig, Germany)
26. September 2023, 3 - 4 pm CET
Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice by Lize Jiskoot (Erasmus Medical Center Rotterdam, Netherlands)
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The World Duchenne Awareness Day 2023 theme is ‘Duchenne: Breaking Barriers’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this, WDAD supports creating a society that provides equal opportunities for all. This year they organize the 10th edition. People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face…
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The World Muscle Society (WMS) is delighted to invite you to the 28th International Annual Congress of the World Muscle Society that will take place 3rd – 7th October 2023, in Charleston, South Carolina, United States.
This 5-day meeting will be an opportunity to catch up on the latest developments in neuromuscular diseases from all around the world. The main thematic topics of this congress focused on translational medicine are: Topic 1: Understanding phenotypic and genetic diversity in neuromuscular disorders
Topic 2: Pathobiology of neuromuscular repeat expansion diseases
Topic 3: The effect of lifestyle, exercise and nutrition on neuromuscular pathology and outcomes
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The MYO-MRI Imaging in Neuromuscular Disease Conference will take place from 5-7 November, 2023 in Berlin, Germany. The conference aims at promoting exchanges between radiologists, neurologists, biologists, physicists, engineers, and other scientists involved in neuromuscular imaging, particularly (but not exclusively) focusing on MR imaging and spectroscopy.
The main topics selected for the 2023 edition are: emerging imaging approaches, other imaging modalities, dynamic imaging, and clinical research.
ERN EURO-NMD endorsed this event. Early bird preferential rates apply till July 31st!
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The ERICA General assembly, which took place in Madrid 6-7 July, 2023, presented the achievements of the past year and tackled many topics related to ERN research activities such as data collection and sharing, clinical trials, drug repurposing, innovation and collaboration with industry, and outcome measure development.
With two productive days full of interactive sessions, the assembly was a very pleasant opportunity to meet the community in person and hear interesting perspectives on the future of research on rare diseases!
The aim of the ERICA consortium, in which all 24 European Reference Networks (#ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. |
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Quality assurance, variant interpretation and data management in the NGS diagnostics eraThe 5th International Training Course on Quality assurance, variant interpretation and data management in the NGS diagnostics era, will take place in Warsaw (Poland) on 18-20 October 2023. This Training Course is part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). In particular, this Course is a part of the WP14 on “Data Management & Quality Training”, which aims to organize residential training courses in different Countries. |
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