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we have several good news to announce this month: the registration for our Spring School on "Deep Brain Stimulation in Dystonia" in April is now open!
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And as always you will find news on 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
Rare Disease Day
ERN-RND Webinars
MLD Eligibility Panel
Upcoming Events
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ERN-RND SPRING SCHOOL 2024 - Registration open
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Our 5th Winter School will be a Spring School this year and will focus on Deep Brain Stimulation in Dystonia. It will be held online from April 17 to 19, 2024.
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DISEASE KNOWLEDGE
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NEW Patient Journey: Multiple System Atrophy (MSA)
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The patient jouney for Multiple System Atrophy (MSA) is now available and can be downloaded on our website. A big thank you to our ePAG representative Lubomir Mazouch, who developed this patient journey, together with Mary Kearney, also ePAG representative, and members of the Disease Group "Atypical Parkisonian Syndromes".
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As of now it is only in English, translations into German and French will follow soon.
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NEW Patient Journey HSP: In Simplified and Traditional Chinese available
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As first of all ERNs we now have a Chinese version of the HSP patient journey. Although Chinese is not a language spoken in the EU, it is still important to make knowledge on rare neurological diseases accessible in as many languages as possible to help people all over the world.
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We thank Louis Lim and his mother, Luo Wen Juan, for translating the patient journey into Simplified and Traditional Chinese.
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If you want to have a look at all our patient journeys and the available languages, have a look here.
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RARE DISEASE DAY 2024
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300 million people worldwide are living with a rare disease. Every last day on February is Rare Disease Day, which is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. As in previous years, in the coming year we will continue to support the Rare Disease Day.
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If you want to help raise awareness, visit the webpage of Rare Disease Day, where you can download banners and profile pictures for your social media accounts, share your own rare disease story or get involved in many other activities.
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Also in German:
Online Symposium Rare Diseases 2024 "Seltene Erkrankungen im ärztlichen Alltag - moderne und KI-basierte Verfahren zur Diagnoseunterstützung", Center for Rare Diseases Tübingen, 28.02.2024, 5-7:40 pm CET. More information and programme, to register click here.
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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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06.02.2024, 3-4 pm CET | ‘Huntington disease: new insights into molecular pathogenesis and therapeutic opportunities’ by Sarah Tabrizi, UCL Queen Square Institute of Neurology, London, UK. SIGN UP here
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15.02.2024, 4 pm CET | ‘SMA genetics in the therapeutic and newborn screening era’ by Eduardo Fidel Tizzano, Department of Clinical and Molecular Genetics at the Vall d’Hebron Hospital in Barcelona, Spain. SIGN UP here
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20.02.2024, 3-4 pm CET | ‘Newborn screening in leukodystrophies’ by Lucia Laugwitz, University Hospital Tübingen, Germany. SIGN UP here
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27.02.2024, 3-4 pm CET | ‘Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice’ by Lize Jiskoot, Rotterdam University Medical Center, Netherlands. SIGN UP here
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29.02.2024, 4 pm CET | ‘Rhabdomyolysis’ by Antonio Toscano, University of Messina, Italy. SIGN UP here
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12.03.2024, 3-4 pm CET | ‘The spectrum of genetic synucleinopathies’ by Leonidas Stefanis, University of Athens Medical School, Athens, Greece. 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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ERICA Webinars for clinical studies
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To stimulate the development of inter-ERN clinical trials on diseases that overarch different ERNs, ERICA webinars are sheduled to inform ERNs about specific aspects of clinical trial research. Check the available webinars here
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MLD Eligibility Panel
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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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UPCOMING EVENTS
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12th European Conference on Rare Diseases and Orphan Products (ECRD) 2024 15-16 May 2024, both online and in Brussels
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The registration for Europe's largest, patient-led, rare disease policy-shaping event is now open! This year's conference will focus on identifying the most critical priorities and areas of improvement. By bringing together stakeholders from across Europe, it aim to build a multi-stakeholder consensus on a comprehensive approach to rare disease policy that can provide a footprint for the next EU legislative cycle.
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European Human Genetics Conference 2024
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1-4 June 2024, both online and in Berlin
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If you are in Berlin, stop by the ERN booth staffed by ERN GENTURIS, ERN-Ithaca, ERN-EYE and EURO-NMD!
Registration is open.
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36th European Academy of Childhood Disability (EACD)
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29th May - 1 June 2024in Bruges, Belgium
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Under the meeting theme ‘Composing a new symphony’, we challenge the increasing innovative unaffordability and policy difficulties and will work towards new collaborations by embracing positive thinking, taking on responsibilities, and reshaping our plans to meet the needs of a changing world. And we invite you all to join us on this journey to contribute to a brighter future for ourselves and for generations to come!
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10th Congress of the European Academy of Neurology
29 June - 2 July, in Helsinki and online
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The overarching theme is "Neuromodulation: Advances and Opportunities in Neurological Diseases". The current state and future directions of neuromodulation will be addressed with relevant questions such as which techniques are avaialble as diagnostic tools or therapeutic intervention; how to precisely target specific cortical regions, deep brain structures and head nerves for therapeutic purposes; and how to advance neuromodulation into new areas of neurology such as chronic minimally conscious state or limb prosthesis.
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International Congress of Parkinson's Disease and Movement Disorders 2024
September 27 - October 1, Philadelphia, PA, USA
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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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