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With Rare Disease Day approaching, we’re highlighting the JARDIN Campaign on European Reference Networks on social media: The campaign features daily posts, with ours shared on February 18 - help amplify the message and raise awareness of the role of ERNs in rare diseases by sharing the posts (see below). Also, don't miss the call to apply for the David Marsden Award 2026 - including the chance to receive €10,000 towards your research on Dystonias - and the upcoming AGI Ataxia Expert Masterclass on genetics, disease mechanisms, and trial readiness in SCAs. Lastly, we invite you to share a PhD position in preclinical development of individualized antisense oligonucleotides (ASOs) for rare neurological diseases.
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And as always you will find information on our upcoming webinars and further 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 Healthcare
Job Opportunity
Rare Disease Day 2026
Funding Opportunity
AGI Masterclass
Upcoming Events
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ABOUT US
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WEBSITE New Disease Knowledge Pages
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DISEASE KNOWLEDGE
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UPDATE Guideline NBIA, Diagnostic Flowcharts for Dystonia, Diagnostic Flowcharts for Paroxysmal Disorders
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There have been 3 updates for Dystonia disease knowledge documents - find them 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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Next ERN-RND webinar will be on:
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12.02.2026, 4-5 pm CET | ‘CPMS Use and Value for Genetic Case Discussions’, by Fernanda Fortunato, University Hospital St Anna, Ferrara, Italy. SIGN UP here. (EURO-NMD)
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03.03.2026, 3-4 pm CET | ‘Getting the most out of Physiotherapy in Dystonia’ by Maarten Nijkrake, Radboud University Meidcal Center, Nijmegen, the Netherlands. SIGN UP here. (ERN-RND)
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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.
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Free Courses for Healthcare Professionals, Caregivers & Family Members
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The Huntington Academy is a multinational, multilingual initiative designed to address the significant gaps in care provision for families impacted by Huntington’s disease (HD). Its mission is to empower the HD community through knowledge, skills, and collaborative learning, fostering improved care, advocacy, and quality of life.
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It is an innovative and comprehensive e-learning platform designed to provide accessible and high-quality educational resources for both formal (healthcare professionals) and informal (family members and friends) caregivers of individuals affected by HD. The Huntington Academy contents are available in four languages – Bulgarian, English, French and Spanish.
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The platform includes two transversal core courses — “What is HD? (HD basics)” and “Communication Skills in HD Care” — and seven domain-specific courses covering key disciplines in HD care (Neurology, Psychology, Nutrition, Physiotherapy, Speech Therapy, Occupational Therapy and Oral Care).
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All the Huntington Academy contents were jointly created by patient organizations, family members and healthcare professionals from the countries involved in the consortium.
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AGI Webinar Series: Preventive Trials for SCAs
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Ataxia Global Initiative launched a new webinar series focusing on preventive trials in the spinocerebellar ataxias (SCAs) — a developing area in ataxia research.
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Preventive approaches build on recent progress in understanding pre-ataxic disease stages and early biomarkers, representing the next step toward earlier intervention. This concept has already been explored in other neurodegenerative diseases, and the series aims to translate these insights to SCAs. See the full program here.
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The webinars will address:
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• The rationale for preventive trials
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• Characterization of the pre-ataxic stage in SCAs
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• Lessons learned from related conditions
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• The potential of emerging biomarkers
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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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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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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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Learn more about the Neuroradiology Expert Advice Panel in this video interview with Eva Bültmann, who is an expert in neuroradiology and coordinates this panel.
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JOB OPPORTUNITY
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PhD Position in Preclinical Development of Individualized Antisense Oligonucleotides (ASOs) for Rare Neurological Diseases
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The EU-funded Doctoral Network “MMM – Medicine Made to Measure” offers a PhD position in “Preclinical development of ASOs for rare neurological diseases” at the Hertie Institute for Clinical Brain Research, Tübingen, Germany.
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Further information can be found here and here.
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Application deadline is 6th of March 2026.
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RARE DISEASE DAY 2026
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JARDIN Campaign on ERNs for Rare Disease Day 2026
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JARDIN has started a Rare Disease Day (RDD) campaign that focuses on patient stories from the different ERNs. Our story will be posted on February 18 - please help us raise awareness and share JARDIN's post on LinkedIn and Facebook on this day.
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Also go get the RDD outreach material (email signature, virtual background, social media banner...) from EURORDIS to support the rare disease community - also available in many different languages. Find it here.
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And if you have an event going on post it on the RDD website!
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Watch the official RDD 2026 video here.
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FUNDING OPPORTUNITY
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The David Marsden Award 2026
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Apply now for the David Marsden Award 2026, and your opportunity to win €10,000 towards your research.
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The award was introduced by Dystonia Europe in 2003 and is presented every year to stimulate research on dystonia, especially by young scientists in Europe.
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- The Award sum is € 10,000 for papers (i.e. manuscripts for original publication – no abstracts) on aetiology, pathogenesis, diagnosis or therapies in dystonia or on the psycho-‐social effects
- Applicants should be under 45 years of age
- Submitted papers may have been published within the last two years
- The applicant should be the first author.
- The research must have taken place within Geographical Europe.
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Deadline for submissions is March 1, 2026. To apply click here.
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AGI MASTERCLASS
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AGI Ataxia Expert Masterclass
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The Ataxia Global Initiative is inviting you to register for the 1st AGI Ataxia Expert Masterclass on Spinocerebellar Ataxias (SCAs), held online on 21–23 April 2026. The masterclass brings together leading international experts to address genetics, disease mechanisms, and trial readiness in SCAs.
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Content: The program delivers advanced, up-to-date content with a strong emphasis on research and basic science, covering genetic diagnostics, pathophysiology, therapeutic strategies, and clinical, digital, imaging, and molecular outcomes relevant for clinical trials. See Full Program here.
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Audience: This masterclass is designed for clinicians and basic researchers working in ataxias and assumes prior foundational knowledge of ataxia characteristics, as gained through NAF/MDS training or comparable clinical or research experience.
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JARDIN NEWSLETTER #4
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The New JARDIN Newsletter is Out
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JARDIN has entered the stage in which the Joint Action moves from the elaboration phase to real-world implementation. The fourth issue of JARDIN's internal newsletter contains information on the tasks and achievements from the past six months, as well as upcoming activities that will guide the Work Packages into the implementation phase.
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Find the newsletter here.
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UPCOMING EVENTS
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3rd Expert Summit on the Future of Deep Brain Stimulation
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February 22-24, 2026, Würzburg (Germany)
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- Network-wide modulation and therapeutic effects of DBS
- Translational approaches in DBS
- Computational modelling and imaging in DBS
- Hardware innovations and technological needs
- Digital Innovations in DBS
- Closed-loop-neurostimulation
- Alternative technologies for targeted neuromodulation
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Find the programme here and more information here.
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REMEDi4ALL Drug Repurposing Bootcamp for Academics
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March 11–12, Cambridge (England)
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The bootcamp is targeted at early-career researchers and principal investigators who are currently leading, or aiming to lead, a drug repurposing project.
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This in-person training programme is designed to support the effective translation of drug repurposing research. It combines expert lectures, interactive discussions, and small-group working sessions, and provides participants with the opportunity to engage directly with key stakeholders in the drug repurposing field.
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Please note that course fees, travel, and accommodation costs are fully covered for selected participants.
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Places are limited to 20, and applications close on 25 February 2026.
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Further information and the application form are available here.
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If you have any questions, send an email.
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13th European Conference on Rare Diseases and Orphan Products
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June 3-4, 2026, Prague and online
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The next ECRD will be held on 3-4 June 2026 in Prague and will be titled “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”.
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38th Annual Meeting of EACD
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June 3-6, 2026, Galway, Ireland
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The old Irish wisdom ‘Mol an Óige agus Tiocfaidh Siad’ – Encourage the young and they will flourish – is the theme of EACD 2026. The conference will focus on disability and health through a holistic lens. Taking a lifespan approach and positioning the voice of people with childhood-onset disabilities and their families at the centre of all that we do, we aspire to support people with disabilities to flourish not just now but into their futures.
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Our ePAG Mary Kearney will also give a talk on "From Survey to Practice: Strengthening Transition Pathways in Rare Disorders to Foster Lifelong Participation, Community Integration, and Person-Centred Continuity of Care"
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12th Congress of the European Academy of Neurology
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June 27-30, 2026, Geneva, Switzerland
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EAN's overarching theme for 2026 is Brains, Bytes & Beyond: Tech in Neurology. The outsourcing of cognitive capacities from humans to artificial intelligence offers huge opportunities but also significant challenges and risks. In clinical neurology, the impact of computing will range from applications like restorative therapies to the very fundamentals of our profession such as clinical reasoning and decision making. Through this year’s theme, EAN will explore the extent to which computing is finding its way into neurological practice.
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For Early bird registration click here. Find the programme here.
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ICAR 2026
November 10-13, 2026, Atlanta, Georgia (USA)
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Ataxia UK, National Ataxia Foundation (NAF), Friedreich’s Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI) are pleased to announce the date for the next International Congress for Ataxia Research (ICAR).
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ICAR 2026 will take place at the Renaissance Atlanta Waverly Hotel & Convention Center in Atlanta, Georgia, U.S. Please save the date for November 10-13, 2026.
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ICAR 2026 will be the place to share the latest ataxia research, including updates on Friedreich's ataxia and SCAs 1, 2, 3, 6, 7, and more. Attendees will hear developments in novel treatment approaches, clinical trial results, and scientific debates from leading ataxia researchers. There will also be the opportunity to network with academic and industry leaders. Special sessions and events are planned for junior researchers.
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Registration and abstract submission will open in March.
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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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