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we hope you all had a great start into 2025 and are eager to learn more about rare neurological diseases, starting with our 6th Winter School on 12-14 March - so save the date! The winter school will focus on "Challenges of Treating Rare Neurological Diseases" and will be held online.
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What else awaits you in this issue? The conclusions and recommendations of the conference on "For an EU Commitment to Tackling Rare Diseases" in Budapest 2024, a lot of social media materials for Rare Disease Day 2025 and user information on our educational webinars.
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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
Cross-border Health Care
Results of Conference on Rare Diseases 2024 (Budapest)
Rare Disease Day 2025
Upcoming Events
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ABOUT US
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The European Pediatric Neurology Society (EPNS) and the European Reference Network for Rare Neurological Diseases (ERN-RND) are organizing a Winter School on Challenges of Treating Rare Neurological Diseases.
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The school will take place virtually, from 12th to 14th March 2025.
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Day 1: Disease Modifying Therapies
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Day 2: Movement Disorders
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Day 3: Co-morbidities and Cases
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DISEASE KNOWLEDGE
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Have you missed one of our webinars? Then you can watch the recorded sessions in our Disease Knowledge Hubs of each Disease Group.
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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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TODAY 09.01.2025, 4-5 pm CET | ‘The Role of Biopsy in Autophagic Myopathies’ by Teresinha Evangelista, Institute of Myology & Pitié Salpêtrière Hospital – AP-HP, Paris, France. SIGN UP here.
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16.01.2025, 4-5 pm CET | ‘The Role of Biopsy in Acquired Myopathies, other than Inflammatory Myopathies’ by Sarah Leonard-Louis, Pitié Salpêtrière Hospital – AP-HP, Paris, France. SIGN UP here.
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04.02.2025, 3-4 pm CET | ‘Psychiatric and neuropsychological assessments in Huntington’s disease’ (provisional title) by Mayke Oosterloo, Maastricht University Medical Center, Netherlands. SIGN UP here.
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eanCampus offers monthly webinars, 2 master classes per year and weekly podcasts on 3 expert levels (basic, advanced, expert), in total more than 1000 pieces. The next webinar will be on:
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29.01.2025, 4-5 pm CET | ‘What's new in the Treatment of Gliomas?’ by Alberto Picca, Giulia Berzero and Jaime Gallego Perez de Larraya. More information here.
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CROSS-BORDER HEALTH CARE
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MLD Treatment 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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Neuroradiology Expert Advice for Diagnostic and Management Decisions in RND
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ERN-RND has established a standard pathway for providing expert neuroradiological advice across sites. Our ERN-RND member hospitals (and affiliated partners) are encouraged to contact us for any RND case for which they would like a second opinion as a basis for individual recommendations for diagnostic and management strategies to optimize patient care.
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Possible scenarios for which clinicians might want to use this offer include (but are not limited to):
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- Child with mild developmental delay: benign / onset of disease? -> cMRI: delayed brain maturation vs. (subtle) structural abnormalities
- Child with delay + subtle signs: acquired / genetic? -> cMRI: acquired disease, e.g. CMV infection / TORCH vs. likely genetic
- Acutely ill patients with suspected encephalopathy -> cMRI: secondary, e.g. infectious / para-infectious vs. metabolic / genetic
- Cerebellar syndrome with fast progression -> cMRI: secondary, e.g., cerebellitis vs. genetic
- Patient after pharmacological treatment showing brain volume reduction -> cMRI: side effects vs. neurodegenerative / neurogenetic disease
To make use of this opportunity, imaging data must be provided via CPMS. Advice will be provided in a virtual meeting between the referring physician plus the initial neuroradiologist and a dedicated ERN-RND neuroradiological expert clinician (and further experts if necessary. Meetings are facilitated by the ERN-RND CPMS helpdesk.
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You are affiliated to an ERN-RND expert center and would like to receive neuroradiology advice for one of your patients?
Please contact us.
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Online Multidisciplinary Board for Deep Brain Stimulation in Dystonia
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ERN-RND has established a standard pathway for providing multidisciplinary expert recommendations concerning Deep Brain Stimulation (DBS) in Dystonia.
Potential questions which the multidisciplinary board may address include (but are not limited to):
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- INDICATION DBS candidate yes/no?
- TARGET Which Target; GPi, STN, VoA?
- PROGRAMMING Treatment advices of implanted patients
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To make use of this opportunity, relevant medical data must be provided via the telemedicine platform CPMS beforehand.
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Advice will be provided by at minimum one dystonia expert specialized in DBS and a stereotactic surgeon specialized in DBS, plus further specialists invited case-by-case in a virtual meeting with the referring clinician.
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Meetings are facilitated by the ERN-RND CPMS helpdesk.
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FOR AN EU COMMITMENT TO TACKLING RARE DISEASES - RESULTS OF CONFERENCE
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The conference in Budapest on November 29, 2024 highlighted the European Economic and Social Committee’s (EESC)exploratory opinion "Leaving No One Behind: European Commitment to Tackling Rare Diseases", prepared at the request of the Hungarian Presidency of the Council of the EU, in which it urges the European Commission to publish a Communication on a European action plan for rare diseases for 2025-2029. The aim is to ensure that patients with rare diseases receive a diagnosis within one year of the onset of symptoms.
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RARE DISEASE DAY 2025
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Join Rare Disease Day 2025
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Raise awareness for rare diseases by using Rare Disease Day 2025 email signatures, profile frames for your social media accounts, virtual backgrounds for your online calls, banners for your websites, posters for your offices and many more items. Check out the website to download all the material for free - even in different languages!
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UPCOMING EVENTS
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Neurodevelopmental Syndromes and Movement Disorders
6-7 February 2025, in Barcelona, Spain
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This event is dedicated to:
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- Neurobiological basis of neurodevelopmental and movement disorders
- Neurodevelopment and neurodegeneration
- Behavioral abnormalities in movement disorders
- Neurodevelopmental and epileptic encephalopathies
- Movement disorders and comorbidities across the lifespan
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11th Congress of the European Academy of Neurology
June 21-24, Helsinki and online
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The overarching theme for the EAN Congress 2025 in Helsinki explores the multifaceted relationship between neurology and society. The topic particularly challenges our practice since our society impacts the progress, priorities, and relevance of neurology, and, conversely, neurology influences decisions and developments in society. This creates a highly complex and consequential set of interactions that affect all of us - professionals and patients alike.
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For abstract submission (till January 16) click here and for information on theme-related workshops here.
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37th Annual Meeting of EACD & 4th Triennial Meeting of IAACD
June 24-28, Heidelberg, Germany and Online
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The combined congress of the European Academy of Childhood Disability together with the International Alliance of Academies of Childhood Disability (EACD-IAACD) will be a hybrid event.The online transmission during daytime will also be supported by 24hour-online live sessions on 26th and 27th June enabling for the first time active worldwide participation.
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16th European Paediatric Neurology Society Congress
July 8-12, Munich, Germany
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The 16th EPNS Munich Congress will classify the field into A for acute, B for Brain, Health & Science and C for Chronic. This way an own alphabet of research and care taking is created: dedicated to the children, equipped for the extending variety of neuropaediatric diseases, stimulating and integrating science.
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Deadline for submissions is the 15th January 2025. Find more Information here.
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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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