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SUMMARY:Advancing Care Pathways for Ataxia and Rare Neurological Diseases in Europe
DESCRIPTION:Advancing Care Pathways for Ataxia and Rare Neurological Diseases in Europe \n10th of December 2026 | European Parliament \nRare neurological diseases represent a complex and under-recognised challenge for European health systems. These conditions are chronic\, progressive and highly heterogeneous\, requiring timely diagnosis\, specialist expertise and long-term multidisciplinary care. Yet across Europe\, patients still face diagnostic delays\, fragmented referral pathways\, uneven access to specialist centres and insufficient coordination between medical\, rehabilitative and supportive services. \nThe European Brain Council’s Value of Treatment (VOT) project on ataxia\, a rare neurological disorder that causes a loss of control of voluntary muscle coordination\, has generated an important evidence base by demonstrating that patient care pathways matter. These studies found that patients attending specialist ataxia centres reported better understanding of their condition\, more tailored care\, better coordinated referrals and better satisfaction trends than those in non-specialist settings. The accompanying cost analysis showed that\, within countries\, resource use and total costs were broadly similar between specialist and non-specialist settings\, while inpatient stays remained a major contributor to overall costs. The innovation of this work is therefore not only clinical\, but also organisational and policy-relevant: it shows that better coordinated specialist care can improve patient experience and pathway quality without clear evidence of a systematic cost penalty. At the same time\, innovation in ataxia is entering a new phase. Advances in genomics\, biomarkers and emerging therapeutic approaches — including gene replacement\, gene editing\, oligonucleotide and protein-based strategies — are creating new opportunities in hereditary ataxias\, even if major translational and access challenges remain. This makes the need for structured care pathways\, expert centres and coordinated research-ready systems even more urgent\, so that patients can benefit from both current best care and future therapeutic innovation. \nWithin EBC’s Rare Brain Disease Ecosystem (RBDE)\, the ataxia case study forms part of a broader project portfolio aimed at bridging neuroscience\, clinical innovation and patient needs across rare brain conditions. In that sense\, ataxia serves as a strategic entry point for addressing wider challenges shared across rare neurological diseases\, including inequalities in access\, fragmented care\, emerging needs in genomics and health data\, and the need to translate expertise into more coordinated and patient-centred pathways. The challenge is no longer only to document unmet needs\, but to build shared priorities for implementation: how to improve earlier diagnosis\, organise multidisciplinary follow-up\, connect national systems with European expertise\, and ensure that innovation translates into tangible improvements in patients’ lives. Such a meeting is essential to move from evidence generation to actionable policy recommendations and to ensure that future rare neurological disease strategies are informed by clinical expertise\, lived experience and health system realities alike. \nMeeting objective  \nThis invite-only meeting aims to translate the European Brain Council’s Value of Treatment findings on ataxia into concrete scientific and policy priorities for Europe\, while positioning ataxia within the broader Rare Brain Disease Ecosystem. Using ataxia as a strategic case study\, the event will bring together experts\, patient association representatives and policymakers to identify how earlier diagnosis\, specialist multidisciplinary care\, rehabilitation\, patient-centred outcomes and cross-border expertise can be better integrated into care pathways for ataxia and other rare neurological diseases. The goal is to support more coordinated\, equitable and forward-looking care models and to inform the next phase of European action on rare brain diseases. \nAcknowledgement: We would like to thank Biogen for sponsoring this event.
URL:https://www.braincouncil.eu/event/advancing-care-pathways-for-ataxia-and-rare-neurological-diseases-in-europe/
LOCATION:European Parliament\, Rue Wiertz 60\, Brussels\, 1047\, Belgium
CATEGORIES:RBDE
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ORGANIZER;CN="European Brain Council":MAILTO:advocacy@braincouncil.eu
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DTSTART;VALUE=DATE:20270406
DTEND;VALUE=DATE:20270411
DTSTAMP:20260807T103822Z
CREATED:20260807T100857Z
LAST-MODIFIED:20260807T103822Z
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SUMMARY:17th Congress of the European Paediatric Neurology Society (EPNS)
DESCRIPTION:The European Paediatric Neurology Society (EPNS) is delighted to welcome you to the 17th EPNS Congress\, taking place in Barcelona\, Spain\, from 6–10 April 2027. \nThe congress will bring together more than 2\,000 participants from around the world\, including leading professionals\, researchers and experts in paediatric neurology. Under the scientific leadership of Dr. Carmen Fons and her team\, the programme will explore the latest developments and emerging challenges in the field\, with a focus on topics including artificial intelligence\, rare diseases\, neurodevelopmental disorders\, advanced therapies\, new diagnostic technologies\, bioethics\, neurogenetics\, neuroimaging and epigenetics. \nTo register for participation\, please complete the registration form. \nregistration formFind out more
URL:https://www.braincouncil.eu/event/17th-congress-of-the-european-paediatric-neurology-society-epns/
LOCATION:Barcelona\, Spain
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20270612
DTEND;VALUE=DATE:20270616
DTSTAMP:20260910T080346Z
CREATED:20260909T123702Z
LAST-MODIFIED:20260910T080346Z
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SUMMARY:13th Congress of the European Academy of Neurology - Gothenburg 2027
DESCRIPTION:The 13th Congress of the European Academy of Neurology (EAN) will take place in Gothenburg\, Sweden\, from 12–15 June 2027\, bringing together neurologists and healthcare professionals from across Europe and beyond for four days of scientific exchange\, education and collaboration. \nWith the overarching theme “Transforming Neurology: Embracing Every Brain”\, the congress will explore the latest advances across the full spectrum of neurology\, with a particular focus on the frontiers of treatment and the opportunities offered by rapidly evolving science and technology. Topics will include genetics\, immunology\, neuroprotection and precision medicine\, as well as disease-modifying therapies\, personalised interventions and integrated digital health approaches. \nA comprehensive scientific programme of lectures\, symposia\, workshops and interactive sessions will showcase new insights and developments in neurological research\, diagnosis\, treatment and patient care\, while providing opportunities for discussion and exchange with experts and colleagues from around the world. \nAgainst the backdrop of Gothenburg\, EAN 2027 will offer an inspiring setting to discover the latest developments in neurology\, share knowledge and connect with the wider neurological community. \nFind out more
URL:https://www.braincouncil.eu/event/13th-congress-of-the-european-academy-of-neurology-gothenburg-2027/
LOCATION:Gothenburg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20270913
DTEND;VALUE=DATE:20270917
DTSTAMP:20260831T092907Z
CREATED:20260807T101433Z
LAST-MODIFIED:20260831T092907Z
UID:60903-1820793600-1821139199@www.braincouncil.eu
SUMMARY:IBRO 2027 World Congress
DESCRIPTION:The 2027 IBRO World Congress will take place in Cape Town\, South Africa\, from 13–16 September 2027. Organised by the International Brain Research Organization (IBRO)\, the congress will bring together neuroscientists\, clinicians\, researchers and students from around the world to exchange the latest advances in neuroscience. \nThe 2027 edition will be the first IBRO World Congress to be hosted on the African continent. \nFurther information on registration\, the scientific programme\, abstract submission and accommodation is available on the official congress website. \nFind out more
URL:https://www.braincouncil.eu/event/https-ibro-org-ibro-world-congress/
LOCATION:Cape Town\, South Africa
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