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We would like to introduce you to our new Patient Engagement Manager: Tamara SHEPHERD who will manage interactions between the PAB, patient representatives and the EURO-NMD coordination team. We look forward to working with her. Tamara is French-Australian, she has a background in International Law and Public Affairs. During the last year of her studies, she worked in a pharmaceutical company focused on HIV where she had the opportunity to work with patient organizations.
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The ERN EURO-NMD has produced a series of educational videos on rare peripheral neuropathies to raise awareness, primarily among general practitioners, who play a decisive role in patient care as first line professionals. Rapid referral to a specialist in an expert centre will often reduce diagnostic wandering and, in some cases, enable appropriate and early management, thus 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 a variety of useful information, recommendations, and good practice.
They also feature testimonials from patients, as well as clinicians with expertise in the field of rare peripheral neuropathies, who provide detailed information about the care and treatment options available to patients. Translations in 10 languages will soon be available, so stay tuned!
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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 is a great pleasure to invite you to our next online board meeting: ⚠ (NEW DATE) ⚠ Wednesday, November 15th, 17-19h CET We will present the work packages of the new grant 2023-2027, and give an overview of the ERNs five-years-evaluation process and outcomes. The detailed agenda and the zoom link of the meeting 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 Norwegian initiative to develop a multidisciplinary management and care specialty group within the ERN EURO-NMD was supported by the member representatives at the board meeting in Brussels in July 2022. The cross-cutting specialist group was founded at the annual ERN EURO-NMD meeting in Porto in February 2023.
A first workshop on multidisciplinary management and care was organized at the Frambu Resource Centre for Rare Disorders, outside of Oslo in Norway on 4-5 May 2023. The workshop gathered speakers with extensive experience in NMDs and specialty group members with the aim of sharing knowledge and developing activities within the multidisciplinary group.
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Mitochondrial Medicine - The GENOMIT initiative in Pisa, Italy on November 17-18, 2023. This conference, based on the experience of the GENOMIT consortium, funded by the European Joint Programme on rare diseases, aims to bring these groups together, exploring the most recent advances in term of natural histories, artificial intelligence, clinical trial readiness and emerging treatment options in preclinical and clinical models.
Participants from: Italy, Germany, UK, USA, Japan, China Main Organizers: Michelangelo Mancuso, Gabriele Siciliano Scientific Committee: • Prof. Michelangelo Mancuso • Prof. Gabriele Siciliano • Dr.ssa Giulia Ricci • Dr. Vincenzo Montano • Dr. Piervito Lopriore • Dr.ssa Adriana Meli Organising secretariat (FirstClass Events & Conferences): leonardo.visani@fclassevents.com
Endorsements and Sponsorships: UNIPI, AIM; AOUP, E-mit, ERN EURO-NMD; Comune di Pisa
Registrations fees include: Access to the conference, Coffee breaks, possibility to get CME credits for Italian participants, congress KIT and certificate of attendance. Dinner not included, VAT included The event is for maximum 70 participants and once this number of participants will be reached, registrations will be closed.
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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.
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Mitochondrial Medicine - Therapeutic Development, the 8th meeting in this series will take place on 18-20 March 2024.
The conference will build new partnerships that harness our understanding of the disease mechanisms, accelerating the pace of effective treatments for mitochondrial diseases. This year’s programme will include discussions about recent discoveries on mitochondrial DNA (mtDNA) disorders to develop new therapeutic targets and the latest advances in gene editing and genomic technologies.
📍 Wellcome Genome Campus, Hinxton, Saffron Walden, United Kingdom
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October 2023
October is Charcot-Marie-Tooth awareness month at EURO-NMD, and on this occasion, the Peripheral Nerve Diseases working group, led by Dr. Davide Pareyson, is organizing a series of webinars on CMT. Do not miss this opportunity to discuss live with the experts!
Wednesday, 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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10. October 2023, 3 - 4 pm CET Advanced therapies and clinical trials in Leukodystrophies by Caroline Sevin & Nicole Wolf (Reference Centre for Leukodystrophies, University Hospital Bicetre, Paris, France & Amsterdam Leukodystrophy Center, VUMC- Amsterdam University Medical Centers, Netherlands)
17. October 2023, 3 - 4 pm CET Neuro-ophthalmological presentations of rare neurometabolic diseases by Tatiana Brémovà-Ertl (Center for rare diseases, University Hospital Bern, Switzerland)
24. October 2023, 3 - 4 pm CET Newborn screening in leukodystrophies by Lucia Laugwitz (University Hospital Tübingen, Germany)
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Registrations for the 2023-2024 session of the Inter-University Diploma of Myology (DIU de Myologie) are open! Coordinated by Dr Guillaume BASSEZ, Dr Gisèle BONNE and Pr Shahram ATTARIAN, the DIU aims to provide theoretical and practical training in myology, designed to improve the assessment and management of people with neuromuscular pathologies, and to develop clinical and biological research in this field. Please note that teaching is given in French. This session will take place between December 2023 and May 2024 (written exam in June and oral in October 2024) If you wish to apply, please send your CV and cover letter to diumyologie@institut-myologie.org by 27/10/2023. More information in French: https://www.institut-myologie.org/enseignement/diu-de-myologie/
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INSPIRE NMD provides a forum to share our skillsets with the aim of improving the quality of psychosocial care offered to people with slowly progressing NMD. I wanted to offer some introductory ACT training to the group, since this is where my expertise lies. Also, we recently completed a randomised controlled trial – with people with FSHD, IBM, BMD and LGMD – that showed ACT can improve quality of life and mood (Rose et al., 2023). What is ACT? ACT is a newer type of cognitive behavioural therapy that aims ...
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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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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 World Federation of Neurology’s XXVI World Congress of Neurology (WCN 2023) will be in Montreal, Canada, from 15 -19 October 2023. The congress will be proudly co-hosted by the Canadian Neurological Society (CNS).
They hope that this event will bring us back to our regular congress routine, allow participants to see each other in person, rekindle friendships and collaborations, and establish new ones. This WCN will bring us up to date in the broad field of neurology, from tropical neurology to molecular genetics. The Scientific Program and Teaching Programs are at the core of the World Congress of Neurology.
These are complemented by plenary lectures from leading experts in their fields, the exciting and entertaining Tournament of the Minds, cutting edge scientific sessions relevant to all the corners of the globe, and poster sessions that will feature the research of young neurologists of the future.
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The ICNMD International Congress on Neuromuscular Diseases is organized on behalf of the Specialty Group on Neuromuscular Diseases (NMD) of the World Federation of Neurology (WFN). Since 2014, the Congress has taken place in a two-year cycle. The aim of the ICNMD Congresses is to offer attendees an updated view on neuromuscular disorders and that networking opportunities increase their international experience and collaborations. The scientific and program committee are invited from all continents around the world to enable this wide spectrum.
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Under the Horizon Europe Framework Programme, a new two-stage call for proposals for “Establishing novel approaches to improve clinical trials for rare and ultra-rare diseases” was published on 27 July, 2023. The project generated from the topic should not only develop capacities and capabilities to execute innovative trial designs, but also plan to identify solutions to address scientific gaps as well as technical and operational challenges, and to collaborate/find synergies with relevant existing initiatives to establish a new, dedicated, rare disease specific and sustainable infrastructure...
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The Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds for fiscal years (FY) 2023 – FY 2025 to support clinical trials for rare diseases and conditions. The purpose of this funding opportunity announcement is to fund clinical trials of products evaluating efficacy and/or safety in…
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The recommendation of EMA’s human medicines committee (CHMP) has recommended not to renew the Marketing Authorisation for Translarna (ataluren), a medicine for treating patients with Duchenne muscular dystrophy (DMD), which received Conditional Market Authorisation (CMO) in Europe in 2014.
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The Ottawa Hospital NeuroMuscular Centre is accepting applications for 1 or 2 year funded Neuromuscular / Clinical Neurophysiology (EMG) fellowships!! For more information, or to submit an application (CV and letter of intent), please contact Dr Ari: Breiner abreiner@toh.ca. Applications are due October 31.
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