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we are looking forward to our online Spring School on DBS in Dystonia next week with already 200 participants! Don't miss it, registration is still open - for more information have a look at the finalised programme below.
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What else? A children's book about Adrenoleukodystrophy, information on national workshops organised by the EC, upcoming webinars and events. Enjoy reading!
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Best wishes,
The ERN-RND Coordination team
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Content
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ERN-RND Spring School 2024
Disease Knowledge
ERN-RND Webinars
MLD Treatment Eligibility Panel
Act Rare 2024
National Workshops
Upcoming Events
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ERN-RND SPRING SCHOOL 2024 - Registration open
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Last chance to register for our Spring School on Deep Brain Stimulation in Dystonia, held online from April 17 to 19, 2024! To register click here.
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17 April 2024 I Indications and Diagnosis
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18 April 2024 I How to do DBS / Neurosurgery
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19 April 2024 I Troubleshooting and Cases
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DISEASE KNOWLEDGE
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CHILDREN'S BOOK about Adrenoleukodystrophy "When my brother got ill"
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This children's book was developed by "Alex - the Leukodystrophy Charity", located in the UK and endorsed by ERN-RND.
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You can read the book online for free or order a hard copy.
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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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04.06.2024, 3-4 pm CEST| ‘Genetic Testing in Ataxias and HSP - in whom, when and how’ by Rebecca Schüle & Ludger Schöls, University Hospital Heidelberg & University Hospital Tübingen, Germany. SIGN UP here
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25.06.2024, 3-4 pm CEST| ‘Autoimmune Parkinsonism’ by Jeroen Kerstens, Antwerp University Hospital, Belgium. SIGN UP here
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24.09.2024, 3-4 pm CEST| ‘Clinical Neurophysiology in Dystonia’ by Anke Snijders, Radboud University Medical Center, Netherlands. SIGN UP here
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22.10.2024, 3-4 pm CEST| ‘Neurogeriatric Aspects and Neurological Aspects in Palliative Care of MSA, PSP and Advanced PD’ by Martin Klietz, Hannover Medical School, Germany. SIGN UP here
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05.11.2024, 3-4 pm CET| ‘Diagnostic Approach to Childhood-onset Chorea’ by Juan Darío Ortigoza-Escobar, Hospital Sant Joan de Déu, Barcelona, Spain. SIGN UP here
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NEW GENE THERAPY Webinar Series
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We’re happy to announce our new webinar series on Gene Therapy co-organized by ERN-RND, EURO-NMD, ERN EpiCARE and the European Academy of Neurology (EAN), where we’ll delve into the latest advancements and breakthroughs in this interesting field. Look forward to cutting-edge research, clinical applications and successes, ethical considerations and future prospects as well as to expert discussions and Q&A Sessions.
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10.04.2024, 4 pm CEST | ‘Basic Technologies and Challenges in Translation’ by Hildegard Büning, Hannover Medical School, Germany. SIGN UP here.
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18.04.2024, 4 pm CEST | ‘Lessons Learned Across Different Disorders and Challenges in the Development of Gene Therapies’ by Kathrin Meyer, Children’s Hospital, Columbus, Ohio USA. SIGN UP here.
14.05.2024, 4 pm CEST | ‘N-of-1 to Many Personalized Therapies’ by Terry Pirovolakis, Founder of CureSPG50 and Elpida Therapeutics, Greece. SIGN UP here.
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23.05.2024, 4 pm CEST | ‘Safety Issues in Gene Therapies and how to Address them’ by tba. | | | | |