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we are looking back on a successful Annual Meeting in Tutzing, Germany, filled with inspiring discussions, exciting new projects, and engaging evening events that brought everyone together. We are looking forward to meeting you again next year!
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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 Healthcare
Funding Opportunities
Dystonia Webinar
Newsletter from Partners
Upcoming Events
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ABOUT US
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ERN-RND Annual Meeting 2025 in Tutzing (Germany)
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This year’s Annual Meeting was held from October 26–28 at the Castle of Tutzing in Germany. Our clinicians and patient representatives gathered in disease and working group sessions to reflect on the past year’s achievements and set the course for new initiatives ahead.
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And after a day of productive meetings, it was time for some well-deserved fun! With a Quiz Night and a Poster & Drinks Session which both offered a relaxed setting to continue conversations and connect with colleagues in an informal atmosphere. Thank you all for joining us and see you next year!
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Genetic Testing for Parkinson's Disease - Interview with David Crosiers
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Genetics is transforming how we understand Parkinson’s Disease. With new genes discovered, advanced sequencing tools, and emerging genetic therapies, what is the current use in clinical practice within the ERN-RND expert centers?
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Learn more about the survey results and the next steps in our video interview with David Crosiers.
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FOLLOW US ON BLUESKY
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Add us all, many more will follow!
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DISEASE KNOWLEDGE
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NEW Patient Journey Movie: Huntington's Family
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"That's the thing with this disease: It doesn't just affect the person who has the gene, but entire families." What Martha is referring to here is Huntington's Disease (HD) that has a 50% chance of being inherited. If a parent has the condition, there is a high likelihood that their child could inherit it as well.
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Our patient journey movie "Huntington's Family" portrays the life of a family that is affected by this disease: There is Martha, who is carer to her husband Tom and their daughter Rachel, who also has HD. And there is Rachel's daughter Chloe, who went to genetic counselling and is in the process of being tested. While Rachel's brother doesn't want to be tested, but whose wife is expecting a child that could have the gene, too. "It's a slow train wreck", as Martha describes the family situation.
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The movie shows the different family members’ coping strategies over the years, thereby capturing both their struggles and their moments of light.
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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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TODAY 06.11.2025, 4-5 pm CET | ‘How to Evaluate Patients with Myasthenia Gravis’, by Lorenzo Maggi, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy, & Lutgarde Allard, President of the European Myasthenia Gravis Association (EuMGA & Patient expert). SIGN UP here. (EURO-NMD)
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18.11.2025, 3-4 pm CET | ‘Recent Advances in Episodic Ataxias’ by Elisabetta Indelicato and David Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA. SIGN UP here. (ERN-RND)
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20.11.2025, 4-5 pm CET | ‘Update on Antibodies in Neuromuscular Junction Disorders’, by Valentina Damato, University of Florence, Italy. SIGN UP here. (EURO-NMD)
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25.11.2025, 3-4 pm CET | ‘Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms (NEUROGED Guidelines)’, by Alessandra Fanciulli, Pietro Guaraldi, Medical University Innsbruck, Austria & IRCCS - Institute of Neurological Sciences of Bologna, Italy. SIGN UP here. (ERN-RND)
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26.11.2025, 4-5 pm CET | ‘Innovative Therapies in Myasthenia Gravis’, by Andreas Meisel, Charité – Universitätsmedizin Berlin (CCM), Germany. SIGN UP here. (EURO-NMD)
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27.11.2025, 4-5 pm CET | ‘Myasthenia Gravis in the Pediatric Age’, by Adela Della Marina, University Hospital Essen, Germany. SIGN UP here. (EURO-NMD)
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02.12.2025, 3-4 pm CET | ‘Fluid Biomarkers in FTD’ by Domenico Plantone, AOU - University Hospital Siena, Italy. SIGN UP here. (ERN-RND)
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04.12.2025, 4-5 pm CET | ‘Update on Congenital Myasthenic Syndromes’, by Hanns Lochmüller, Department of Neurology, Faculty of Medicine, University of Ottawa, Canada. SIGN UP here. (EURO-NMD)
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09.12.2025, 3-4 pm CET | ‘The Importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders’ by Maria Judit Molnar, Semmelweis University, Budapest, Hungary. SIGN UP here. (ERN-RND)
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10.12.2025, 4-5 pm CET | ‘Management of Fatigue in Myopathies (NEUROGED Guidelines)’, by Michelangelo Mancuso, Azienda Ospedaliera University of Pisa, Italy. SIGN UP here. (EURO-NMD)
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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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25.11.2025, 17-18 CET I “How Do I Manage Urinary Incontinence in Neurological Patients?”, by Jalesh Panicker, Alessandra Fanciulli, Ivan Adamec. To register click here.
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17.12.2025, 15-16 CET I “The Role of Microglia and TREM2 in Alzheimer's Disease”, by Erica Tagliatti, Estrella Morenas-Rodríguez. To register click here.
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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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FUNDING OPPORTUNITIES
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EHDN/MDS-ES Huntington's Disease Fellowship Programme Open for Applications
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The main objective of the fellowship programme is to motivate and facilitate the training of young professionals (neurologists, psychiatrists, psychologists, physiotherapists, clinical geneticists or other healthcare professionals) working in HD clinical practice through the sharing of knowledge and experience. Fellows selected for the programme spend six weeks working in a highly regarded, multi-disciplinary HD clinic in Europe. Priority will be given to applicants from underserved HD regions. Applications should clearly justify the need, either in relation to overall HD care or to specific aspects of HD care.
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An assistance budget will be provided to help with the costs of the fellowship programme.
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Deadline: Monday, 15 December 2025, 17.00 CET
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DYSTONIA WEBINAR
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Dystonia: Ask the Expert - Webinar Recording Available
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On Thursday, 30 October, 2025, Dystonia Europe held a webinar with three dystonia experts, and invited the audience to share their questions with them:
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- Prof. Alfonso Fasano – Prof of Neurology at Toronto Western Hospital, University of Toronto, Canada and Humanitas University, Milan, Italy
- Dr. Anna Castagna – Head of Movement Disorder Center and Botulinum Toxin Clinic at Fondazione Don Gnocchi Research Hospital, Milan, Italy
- Prof. Kathryn Peall – Professor of Clinical Neurosciences, Cardiff University, Wales, UK
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If you missed the webinar, you can now watch the recording here.
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NEWSLETTER OF PARTNER ORGANISATIONS
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3rd Issue of the JARDIN Newsetter is out
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In this third edition of the external newsletter, you will find highlights from the latest activities of the JARDIN Joint Action, Member States and European Reference Networks (ERNs), and a look at what is coming next.
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Newsletters from Partner Organisations:
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- ERN epiCARE
- EURO-NMD
- EAN (European Academy of Neurology)
- ERDERA (European Rare Diseases Research Alliance)
- EACD (European Academy of Childhood-onset Disability)
- EPNS (European Paediatric Neurology Society)
- ESHG (European Society for Human Genetics)
- MDS (International Parkinson and Movement Disorder Society)
- AGI (Ataxia Global Initiative)
Newsletter from Patient Organizations:
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UPCOMING EVENTS
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2nd Symposium on the Connection Between Physics and Metabolism in Brain Functions
November 7, 2025, online
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Metabolism and cellular mechanics are closely intertwined. Following the success of the 1st international symposium connecting physics and metabolism in brain functions (Barcelona, July 2024), we are pleased to welcome you in Paris for this 2nd edition. This event will bring together world experts in physics, chemistry, neurobiology, and philosophy with the aim of fostering new collaborations and promoting the so-called “night science”, an interdisciplinary approach by which new ideas arise and questions/ hypotheses are generated. Join us and interact with prestigious speakers who will discuss the physics of cellular trafficking, neurotransmission, sensory systems, and beyond. The symposium will also integrate musical pieces to deepen our quest for understanding the living.
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Find programme and registration here.
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“Atassie ereditarie: aspetti clinici, diagnosi molecolare, approcci terapeutici”
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November 12, 2025, Milano, Italy
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The educational course “Atassie ereditarie: aspetti clinici, diagnosi molecolare, approcci terapeutici” (Hereditary ataxias: clinical aspects, molecular diagnosis, therapeutic approaches) is open to both trainees and senior healthcare professionals in Neurology, Neuroradiology, Paediatric-Neuropsychiatry, Genetics, Surgery, Biology, Psychology. The educational course is accredited for CME credits.
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The course will be held entirely in Italian.
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Find the programme and registration here.
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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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Only #SaveTheDate, no registration or programme yet.
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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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Deadlines for Abstract Submission
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- Mini Symposia – 12 November 2025
- Oral Communications, Instructional Courses, Scientific Posters, Technology & Innovation Pitches – 14 November 2025
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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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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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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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