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We hope you enjoyed the Summer break. We are back to work, looking forward to the ERN-RND annual meeting on September 19th and 20th. Everybody is invited to register for online-participation to the public part. Please see below.
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The ERN-RND Coordination team
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Content
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XXVI World Congress of Neurology
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EESC Conference on Rare Diseases
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EACD Conference 2024 – Abstract submission open
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ERN-RND Annual Meeting
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Our ERN-RND annual meeting is coming soon. The non-internal part on 19 September is open for online participation to anyone interested!
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11:00 CET Welcome and overview of ERN-RND.
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Holm Graessner (University Hospital Tübingen)
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11:30 CET The VALOR-Trial – a breakthrough for SOD related ALS.
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Albert Ludolph (University Hospital Ulm)
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12:00 CET Patient journeys.
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Monika Benson and John Gerbild (ERN-RND patient representatives)
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14:30 CET Genetic diagnosis and technological advancements.
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Alex Hoischen (Radboud University Medical Centre, Nijmegen)
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15:00 CET External Quality Assessment for Next-Generation Sequencing Testing in RND.
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Ales Maver (University Medical Centre Ljubljana)
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15:30 CET Genetic strategies of the future, using the example of the Deep Intronic FGF14 GAA Repeat Expansion in Late-Onset Cerebellar Ataxia.
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Stephan Zuchner (Miller School of Medicine, Miami)
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17:00 CET DBS in dystonia.
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Sylvia Boesch (Medical University Innsbruck)
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17:30 CET Current practices regarding HSCT in metachromatic leukodystrophy in Europe and treatment eligibility panels.
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Nicole Wolf (Amsterdam UMC)
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17:50 CET Ups and downs of therapy development in HD.
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Bernhard Landwehrmeyer (University Hospital Ulm)
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MLD Treatment Eligibility Panels in ERN-RND
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In cooperation with the MLD initiative, ERN-RND established a standard pathway for consulting an international MLD expert panel whenever possible benefits of treatment with hematopoietic stem cell transplantation or gene therapy are not straightforward for a patient with confirmed MLD diagnosis. Upon submission of an eligible case, the treatment eligibility panel is convened on an ad hoc basis, organized and supported by the ERN-RND CPMS helpdesk.
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We encourage all physicians in Europe to discuss the possible benefits of treatment options for difficult cases with this MLD expert panel.
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You would like to discuss one of your patients with the panel?
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ERN-RND Webinars
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Upcoming joint educational webinars
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ERN-RND provides free educational webinars on rare neurological and neuromuscular diseases - in collaboration with the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The goal is to share knowledge on rare neurological, movement and neuromuscular disorders via a series of webinars presented by expert members of both networks.
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10 October 2023, 3-4 pm CET ‘Advanced therapies and clinical trials in Leukodystrophies‘ by Caroline Sevin (Reference Centre for Leukodystrophies, University Hospital Bicetre, Paris, France) & Nicole Wolf (Amsterdam Leukodystrophy Center, VUMC- Amsterdam University Medical Centers, Netherlands)
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Webinars by Ataxia Global Initiative
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Interested in ataxia research? Register now for AGI YII webinars:
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iScience: AGI YII Webinar Series on Hot Topics
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Explore Your Future in Ataxia Research
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Speakers: Fay Horak (Oregon Health and Science University, USA); Winfried Ilg (University of Tuebingen, Germany) - WG4 Digital-motor biomarkers
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Tuesday, 19 September 2023, 5-6pm CEST
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Speakers: Filippo Santorelli (Pisa, Italy), David Mengel (Tübingen, Germany), Puneet Opal (Chicago, USA) - WG2 Molecular biomarkers & biosampling
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Tuesday, 24 October 2023, 5-6 pm CEST
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XXVI World Congress of Neurology
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Registration for the XXVI world congress of Neurology in Montreal is open until 26 September.
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EESC - Conference on Rare Diseases
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The European Economic and Social Committee (EESC) under the auspices of the Spanish Presidency of the EU Council and in cooperation with the authorities of the Basque Country is organising a major conference on Rare diseases and European Reference Networks. It will take place on 10-11 October 2023 in the Euskalduna Conference Centre in Bilbao, Spain.
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Registration deadline is 22nd September.
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EACD Conference 2024
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NEWSLETTER
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The ERN-RND Newsletter is published monthly. Please forward this newsletter to your colleagues who can also sign up to receive it directly here or by emailing communication@ern-rnd.eu
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Thank you for your support and take care.
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ERN-RND Coordination team
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