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this month starts with patient journey news: we updated the patient journey for Friedreich's Ataxia in regards to the new medication therapy. In addition to that you can also find a new patient journey on our website: Alternating Hemiplegia of Childhood - developed together with the ERN epiCARE and the patient organization AHC18+.
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Breakthrough Prize - Thomas Gasser: While the winners were announced in September last year, the official ceremony took place last month. Watch here the moment of the awarding on youtube (22:24 min.).
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And as always you will find information on our 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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About us
Disease Knowledge
ERN-RND Webinars
MLD Treatment Eligibility Panel
EC Factsheet
Upcoming Events
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ABOUT US
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Breakthrough Prize for Thomas Gasser
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The official ceremony for the Breakthrough Prize 2024 took place on April 13 in Los Angeles. Our ERN-RND member Thomas Gasser received the prize in the category "Life Sciences" for his research on Parkinson's Disease, together with Ellen Sidransky, Andrew Singleton and Richard J. Youle. The Breakthrough Prize is considered the world’s largest science prize and is endowed with US$3 million.
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Watch here the moment of the awarding at 22:25 min.
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We're hiring a project manager
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ERN-RND is looking for a project manager, full or part time position (70 – 100%), initially limited to a maternity and parental leave replacement until summer 2025 with the option to extend the contract afterwards.
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Application deadline: 31.05.2024. Find the job description here.
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DISEASE KNOWLEDGE
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Patient Journey "Alternating Hemiplegia of Childhood"
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The patient journey was developed together with the ERN epiCARE and the patient organization AHC18+. Find the patient journey as long and short version here.
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UPDATED Patient Journey "Friedreich's Ataxia"
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We updated our patient journey for Friedreich's Ataxia due to the new medication therapy, which has been approved in Europe and USA so far. The updated versions are available in English and German Translations into other EU languages are on-going.
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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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The webinar series on Gene Therapy is co-organized by ERN-RND, EURO-NMD, ERN EpiCARE and the European Academy of Neurology (EAN). Together 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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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. | | | | |