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BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20210603T103000
DTEND;TZID=Europe/Brussels:20210603T130000
DTSTAMP:20260415T200743
CREATED:20210525T145216Z
LAST-MODIFIED:20210531T133305Z
UID:29317-1622716200-1622725200@www.braincouncil.eu
SUMMARY:Open co-design workshop on next generation tools to manage Amyotrophic Lateral Sclerosis and Multiple Sclerosis
DESCRIPTION:Started on January 2021\, the 4 years Horizon 2020 BRAINTEASER project seeks to exploit the value of artificial intelligence\, big data—including those related to health\, lifestyle habits and environment—\, low-cost sensors and smart apps to support patients living with amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS) and their caregivers. Its goal is to develop patient stratification and disease progression models to detect\, alleviate and manage the negative impact induced by factors that contribute to the diseases cause\, progression and survival. The BRAINTEASER multidisciplinary approach\, guided by a strong focus on co-design methodologies\, will pave the path for patients toward a healthier and more fulfilling life and will support the enhancement of public health systems’ capacities to adopt a more predictive and personalised approach to health. \nThe initial BRAINTEASER technical solution will be presented during the “Open co-design workshop on next generation tools to manage ALS and MS” workshop. External experts and the audience will be involved in a collaborative and participative discussion on clinical unmet needs\, disease course\, clinical practice and new emerging research on ALS and MS to assess the BRAINTEASER solution and propose possible refinements. \nClick here to view workshop details\, registration link and agenda. \nBRAINTEASER_open co-design workshop agenda_FINAL_3rd June 2021
URL:https://www.braincouncil.eu/event/open-co-design-workshop-on-next-generation-tools-to-manage-amyotrophic-lateral-sclerosis-and-multiple-sclerosis/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210608T130000
DTEND;TZID=UTC:20210608T173000
DTSTAMP:20260415T200743
CREATED:20210318T192745Z
LAST-MODIFIED:20211026T090546Z
UID:28316-1623157200-1623173400@www.braincouncil.eu
SUMMARY:Value of Treatment 2 Synthesis Meeting
DESCRIPTION:  \nThe European Brain Council (EBC) is pleased to invite you for the Value of Treatment 2 (VOT 2) Synthesis Meeting\, to be held virtually on 8 June 2021 (13:00-17:00 CET). Experts participating in the research will present a synthesis of the results so far and examine the most critical issues in brain diseases in Europe from different perspectives including policymakers\, innovators\, academia and industry\, medical professionals and patient organisations. \n  \nStudy background\nValue of Treatment (VOT) for brain disorders\nThe Value of Treatment (VOT) for brain disorders is a health economics and outcomes research project addressing all brain disorders and coordinated by EBC. Brain disorders – both neurological and mental alike – constitute a major factor\, alongside cancers and cardiovascular diseases\, driving the overall burden of diseases in Europe. Neurological and psychiatric disorders across all lifespans are the leading cause of poor health and disability in Europe. The conclusions of the VOT research project first round released in 2017 (which included case studies on disorders ranging from schizophrenia to Alzheimer’s disease\, epilepsy\, headache\, normal pressure hydrocephalus\, Parkinson’s disease\, multiple sclerosis\, restless legs syndrome and stroke) highlighted the need for more research\, early\, if possible prodromal\, diagnosis and intervention\, integrated seamless care underpinning timely care pathways as a solution to address value-based health care in Europe and access to the best treatments available.   \nValue of Treatment (VOT 2): a second round of case studies\nIn the continuity of these conclusions and in the framework of the VOT research\, a second round of case studies (VOT2) have been developed on new therapeutic areas focusing on rare diseases (Ataxia\, Dystonia and Phenylketonuria) and mental disorders (Anorexia Nervosa\, Autism Spectrum Disorder\, Major Depressive Disorder). The study to be finalised in 2021 is focusing on “early intervention\, bridging the gaps and achieving seamless\, coordinated care”\, and the objective is to examine health gains resulting from optimized healthcare interventions in comparison with current care or no treatment\, and converge data evidence to policy recommendations on how to improve the care pathway(s). Previous joint working sessions aimed to exchange and build synergy between the research-work and DG Sante Rare diseases European Reference Networks (ERNs) programme and research as well as the PECUNIA project from the EU Framework on mental health and well-being. Beyond the research design and considering current context\, the impact of COVID-19 on treatment and healthcare transformation is also explored.  \n  \nClick here to view the programme \nDownload the event report \n  \nPlease see below the final agenda: \nAGENDA VOT2 SYNTHESIS MEETING 8 June 2021 - FINAL
URL:https://www.braincouncil.eu/event/value-of-treatment-2-synthesis-meeting/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20210609
DTEND;VALUE=DATE:20210612
DTSTAMP:20260415T200743
CREATED:20210506T140352Z
LAST-MODIFIED:20210506T141258Z
UID:29007-1623196800-1623455999@www.braincouncil.eu
SUMMARY:EMSP 2021 Virtual Conference
DESCRIPTION:The EMSP 2021 Annual Conference will be held virtually and will be taking place online on the 9th\, 10th and 11th June. \nThe theme of this year’s conference is “MS Care in a Changing World”\, with special focus on the healthcare professionals and non-professional caregivers for MS patients\, and how everyone has had to adapt to the worldwide upheaval since 2020. \nThe #EMSPVirtual2021 Conference aims at gathering the Multiple Sclerosis (MS) community and providing learning and networking opportunities for the MS societies\, healthcare professionals\, individual patients\, and other important stakeholders from the MS field across Europe. \nBuilding on its success in bringing together over 800 key delegates from Europe\, EMSP will relaunch virtually this unique conference experience on the 9th\, 10th and 11th June 2021. \nFor more info\, please visit: https://emspconference.org/
URL:https://www.braincouncil.eu/event/emsp-2021-virtual-conference/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20210609T130000
DTEND;TZID=Europe/Paris:20210609T160000
DTSTAMP:20260415T200743
CREATED:20210517T074403Z
LAST-MODIFIED:20210531T133005Z
UID:29116-1623243600-1623254400@www.braincouncil.eu
SUMMARY:Myalgic Encephalomyelitis in Europe: Roundtable of European Stakeholders and Policymakers
DESCRIPTION:Following joint planning sessions\, EMEA and EFNA (European Federation of Neurological Associations) are arranging a multi-stakeholder\, roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe. \nThe meeting will bring together a variety of initial stakeholders in Europe\, including clinicians\, researchers\, policymakers\, industry and patient representatives from EMEA’s members\, in order to create a better understanding of the many unmet needs and the devastating impact of ME/CFS on patients and families across generations. \nThe meeting will also include discussions on the implications of Long COVID – including similarities to ME/CFS. \nFor more information\, click here.
URL:https://www.braincouncil.eu/event/a-roundtable-of-european-stakeholders-and-policymakers/
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20210615T173000
DTEND;TZID=Europe/Paris:20210615T183000
DTSTAMP:20260415T200743
CREATED:20210608T080616Z
LAST-MODIFIED:20210608T080644Z
UID:29543-1623778200-1623781800@www.braincouncil.eu
SUMMARY:EBC at the Africa - Europe Science and Innovation Platform
DESCRIPTION:AERAP is a response to the call of the European Parliament\, through the adoption of its Written Declaration 45 “on Science Capacity Building in Africa: promoting European-African radio astronomy partnerships”. This call was repeated by the Heads of State of the African Union\, through their decision “Assembly/AU/Dec.407 CXVIII”\, for radio astronomy to be a priority focus area for Africa—EU cooperation. The European Parliament and African Union recognise radio astronomy as a driver of technological development in a wide range of research and industry sectors. Africa-EU collaboration in radio astronomy can open new innovation opportunities in these sectors for companies and research institutes across both continents. Stakeholders from these communities have set up the African-European Radio Astronomy Platform (AERAP). \nAERAP will organise the “Africa-Europe Science and Innovation Summit” on the 15th to 17th of June 2021. \nMonica Di Luca\, EBC President\, will participate in a panel on 15 June at 17:30 – 16:30 opened by Maria Cristina Messa\, Italian Minister for Universities and Research. \nMore information on the panel here.
URL:https://www.braincouncil.eu/event/ebc-at-the-africa-europe-science-and-innovation-platform/
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20210617T143000
DTEND;TZID=Europe/Paris:20210617T160000
DTSTAMP:20260415T200743
CREATED:20210428T132357Z
LAST-MODIFIED:20210615T070646Z
UID:28876-1623940200-1623945600@www.braincouncil.eu
SUMMARY:Patient safety and informed consent: The importance of good off-label use practices
DESCRIPTION:In 2016\, the Declaration for Good Off-Label Use Practice was launched\, supported by a coalition of European organisations dedicated to ensuring that high standards of patient care are upheld and that progress in medical research and innovation is achieved. The GOLUP Declaration recommends that off-label use of medicinal products should only occur if certain criteria\, drawn together by independent experts\, are met. \nFive years later\, the time has come to take a step forward\, to look back at what has been achieved and to prepare for future developments. It becomes necessary not only to take an EU-wide view of the use of off-label medicines but also to take action at the national level. \nThe purpose of this event is to allow an exchange of ideas and experience among stakeholders and local actors\, to understand which paths to take in individual Member States and to allow a continuous exchange of ideas and information on the off-label use of medicines. \nRegister here\nDiscover the declaration\nSpeakers\nCyrus Engerer\nMember of the European Parliament\nGraduated in European Union Politics and Law\, Cyrus Engerer became a Member of European Parliament in 2020 whereby he sits as a full member on the Committee for Environment\, Public Health and Food Safety (ENVI) and on the Special Committee Beating Cancer. He is also substitute member on the Committee on Civil Liberties\, Justice and Home Affairs (LIBE) and on the Committee on Industry\, Research and Energy (ITRE). During the first six months of his role as a Maltese Member of European Parliament\, Engerer became the co-chair of the Mental Health Coalition. \nOther notable successes in the last 6 months include becoming the lead negotiator for the Socialists and Democrats regarding the historic declaration of the EU as an LGBTI Freedom Zone following his appointment to the Committee on Civil Liberties and became one of the\nmost vocal MEPs on healthcare issues relating to the Covid-19 Pandemic following his appointment to the Committee on Environment and Health. He has also been appointed as the shadow rapporteur for the Socialists and Democrats on the ENVI Opinion concerning the protection of workers from asbestos. \nFollowing a lengthy career in politics\, which included posts such as the Personal Representative of the Maltese Prime Minister to the European Institutions responsible for the European Parliament. During the Maltese Presidency of the European Union\, Engerer was the President of the General Affairs Committee and negotiator for the Council of Ministers with the European Parliament. Most recently before he got elected to the European Parliament he worked as an advisor to the Maltese Minister for the Environment\, Climate Change and Planning. Earlier in his career\, Engerer worked in numerous Ministries\, political entities and in EU funding. \nCyrus is a leading activist for Civil Liberties in Malta. He was the spokesperson for the Stand UP! Campaign which led to the introduction of divorce in Malta and he chaired LGBTIQ Labour. After 2013\, the Government appointed Engerer as the first Chairperson of the LGBTIQ\nConsultative Committee which was tasked with the introduction of a number of equality laws in Malta. \nHe is 39 years old and is the partner of Randolph De Battista. \nCoriene Catsman-Berrevoets\nEuropean Paediatric Neurology Society (EPNS)\nCoriene Catsman-Berrevoets has been a Paediatric Neurologist for over 30 years.  She was associate professor and head of the department of Paediatric Neurology at the ErasmusMC / Sophia Children’s Hospital in Rotterdam\, the Netherlands until December 2019 when she retired from management functions to be able to concentrate again on care for paediatric neurology patients and research. \nShe has a wide interest in paediatric neurological topics but acquired brain injury and its neurocognitive sequelae\,  be it through mechanisms as traumatic brain injury\, immune-mediated diseases\, paediatric stroke or brain tumour has always been her main topic of research.  On these topics\, she published more than 200 papers. \nShe served in the board of the Dutch Society of Paediatric Neurology from 1995 and from 2004-2010 as President. She was board member of the Posterior Fossa Society from  2014 and Chair of this Society from 2016-2018.  She has been an elected board member of the European Paediatric Neurology Society 2004 and Chair of the EPNS Education and Training Committee since 2014. Since 2014 she is Chair of the Committee of National advisors to EPNS and the Training Advisory Board. In this role\, she took the lead in the revision of the European training syllabus for paediatric neurologists and evaluated national training programmes in Spain and Georgia. Also\, she was responsible for the organization of multiple EPNS international training events in Budapest\, Alicante\,  Cambridge\, Tblisi\, Astana and Tashkent. More recently during the COVID pandemics\, she was responsible for organizing several virtual  EPNS training courses and monthly webinars. She was member of the organizing Committee of the International Child Neurology Congress in Amsterdam in 2016\, She is member of the advisory boards of the Dutch Neurofibromatosis Society and the Society of patients with Sturge Weber Syndrome and member of various Dutch multidisciplinary professional networks that support organizations of patients with Acquired Brain Injury. \nMarc Dooms\nUniversity Hospitals Leuven\nMr. Dooms (Pharm D) is Senior Orphan Drug Pharmacist at the University Hospitals Leuven. He is compounding/dispensing pharmacist in First in Men Randomized Clinical Trials. He has been a member of the Belgian Order of Pharmaceutical Sciences and the Flemish Society of Hospital Pharmacists (VZA) since 1975 and the Belgian representative to the European Union of Experts in Rare Diseases with frequent collaboration with Orphanet\, the European Society of Clinical Pharmacy\, and the American Society of Health Care Pharmacists\, among others\, since 2000. \nMarc Dooms received his pharmacist diploma at the Catholic University of Leuven\, where he graduated in 1973. In 1974\, he was pharmacy teaching studies certificated at the Catholic University of Leuven\, and in 1975 pursued an internship in Clinical Pharmacy at St John’s University and Columbia University\, New York\, with a special interest in orphan drugs\, compounding of topical therapy and First in Men randomized clinical trials. \nMr. Dooms is founding member of the Belgian National Board on Orphan Drugs within the King Baudouin Foundation and is a graduate-level teacher in dermatological compounding\, drug adherence\, and orphan drugs\, since 2010. He is also teaching pharmaceutical technicians at Leuven Syntra School. He has co-authored a number of publications on orphan drugs. \nFrédéric Destrebecq\nEuropean Brain Council\nFrédéric Destrebecq is the Executive Director of the European Brain Council since October 2014. In this capacity\, he is responsible for providing strategic direction and leadership while managing the day to day operations of EBC and its ongoing relationships with its member associations and other stakeholders\, as well as representing the organisation in various European and national forums. \nPrior to this position\, Fred served the European Union of Medical Specialists (UEMS) as Chief Executive Officer\, and previously as Director for European Affairs. Fred holds a Master Degree in Political Science and International Relations from the Université Catholique de Louvain (Belgium). He also studied at the Institut d’Etudes Politiques (Paris) and University of Wales College (Cardiff)\, in the framework of the former EU Socrates exchange programme. \nAdela Maghear\nEuropean Cancer Patient Coalition\nAdela is a graduate in pharmacy studies and holds two PhD degrees; one in Medical Sciences (Field of Pharmacy) and another in Chemistry awarded by the University of Medicine and Pharmacy Cluj-Napoca (Romania) and University of Lorraine (France)\, respectively. \nWith a strong focus on environmental safety\, her research work and scientific publications have dealt with a wide range of subjects. In 2015\, she changed career paths when she received the Robert Schuman scholarship at the European Parliament Research Service in Brussels. Her career within the field of health policies continued as she became a member of the European Health Parliament\, Antimicrobial Resistance Committee\, that same year. \nIn 2016\, she ushered her skills and expertise in the fields of health and environment to ‘Health Care Without Harm Europe’ where she spearheaded the organisation’s policy work related to pharmaceuticals in the environment and antimicrobial resistance. She developed and led the Safer Pharma Campaign\, aimed to ensure legislation in place\, in order to minimise pharmaceutical pollution as the end goal. \nHer work has been cited in international journals such as The Telegraph\, ChemicalWatch UK\, Pharmaceutical Technology\, Market Business News etc. In 2019\, she worked as an independent Science Advisor leading projects on antimicrobial resistance. \nIn 2020\, she has joined ECPC as Senior EU Affairs Officer leading the policy work of the organisation and coordinating the activities of the Challenge Cancer Parliamentary Intergroup. \nJana Hlaváčová\nEuropean Multiple Sclerosis Platform’s \nJana Hlavacova is herself MS patient for almost 10 years\, all this time she has been active as patient advocate in the Czech Republic and on the European level as well thanks to European Multiple Sclerosis Platform (EMSP). Since 2015 she has been a member of EMSP’s young people’s network\, now she serves as a member of the Executive Committee.\n\nShe was also active in the Czech Civic Association SMS – an association of and for young people with MS in the Czech Republic\, which she led between 2014 and 2016. \nShe currently works for the Ministry of Health of the Czech Republic\, where she coordinates a new agenda of support of and cooperation with patients and patient organisations and patient involvement in decision-making. She is especially interested in real-world data\, patient-reported outcomes and patient involvement in HTA.
URL:https://www.braincouncil.eu/event/golup-off-label-use-event/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210619
DTEND;VALUE=DATE:20210623
DTSTAMP:20260415T200743
CREATED:20201209T083625Z
LAST-MODIFIED:20201209T083625Z
UID:26457-1624060800-1624406399@www.braincouncil.eu
SUMMARY:7th Congress of the European Academy of Neurology - Virtual 2021
DESCRIPTION:The European Academy of Neurology has decided to go virtual again for the 7th EAN Congress on June 19-22\, 2021\, originally to be held in Vienna. \nOnce again\, we look forward to offering you the opportunity to learn from experts in your field\, grow your professional network\, and discover the latest best practices in neurology\, all in the comfort of your home. Building on our experience from the EAN Virtual Congress 2020\, we will utilise the very best technical solutions to provide you with a virtual experience as comfortable and rewarding as the real thing. \nMore info on the website.
URL:https://www.braincouncil.eu/event/7th-congress-of-the-european-academy-of-neurology-virtual-2021/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210621T113000
DTEND;TZID=UTC:20210621T115000
DTSTAMP:20260415T200743
CREATED:20210601T113726Z
LAST-MODIFIED:20210601T113919Z
UID:29439-1624275000-1624276200@www.braincouncil.eu
SUMMARY:EAN2021 Scientific Theatre - The Value of Treatment Project: The Value of Early Coordinated Care for Patients Affected by Rare Neurological Diseases
DESCRIPTION:The 2nd round of the EBC Value of Treatment project will be presented at the Scientific Theatre at the upcoming EAN Congress 2021. EBC Vice President\, Prof. Wolfgang Oertel\, will present The Value of Treatment Project: The Value of Early Coordinated Care for Patients Affected by Rare Neurological Diseases on 21 June 2021\, from 11:30 to 11:50. \nMotivated by addressing the existing gaps in the care pathways\, the EBC Study on Ataxia\, Dystonia and Phenylketonuria (PKU) aims to assess the benefits of early coordinated care and treatment\, multidisciplinary care patterns (also addressing comorbidity) and health care providers education on outcomes to patients and costs.
URL:https://www.braincouncil.eu/event/ean2021-scientific-theatre-the-value-of-treatment-project-the-value-of-early-coordinated-care-for-patients-affected-by-rare-neurological-diseases/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210622T130000
DTEND;TZID=UTC:20210622T143000
DTSTAMP:20260415T200743
CREATED:20210406T064730Z
LAST-MODIFIED:20210601T135909Z
UID:28570-1624366800-1624372200@www.braincouncil.eu
SUMMARY:EBRA at EAN: Special Session 14: The European Brain Research Area
DESCRIPTION:During the 7th EAN Congress in June 2021\, EBRA will hold a roundtable in Room Seville addressing the importance of cooperation and collaboration in the European brain space and presenting more about the project. \nEBRA clusters\, partners\, policymakers\, clinicians and patient representatives will participate discussing among other topics:\n\nThe priorities\, gaps and enabling actions in brain research in Europe\nHow to promote European brain research in the world?\nUnderstanding the importance of operational coordination of brain research in Europe\nUnderstanding the value of coordination in brain research communities\nActivities to enhance coordination in brain research\n\nTo have more information on the Congress and register for the event\, please visit the official website.
URL:https://www.braincouncil.eu/event/ebra-at-ean-special-session-14-the-european-brain-research-area/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210629T083000
DTEND;TZID=UTC:20210629T110000
DTSTAMP:20260415T200743
CREATED:20210526T113226Z
LAST-MODIFIED:20210526T113303Z
UID:29343-1624955400-1624964400@www.braincouncil.eu
SUMMARY:OneNeurology Global Advocacy Workshop
DESCRIPTION:EBC recently joined the OneNeurology Partnership. The focus of this Partnership in 2021 will be in influencing the development of the World Health Organisation’s new Global Action Plan on epilepsy and other neurological disorders [GAP]. \nThe GAP represents a unique opportunity to build an integrated response to neurology across the life course and within healthcare systems – to improve lives of people living with neurological disorders worldwide. However\, to be successful\, we need to mobilise the community to ensure that the plan serves the needs of all those living with neurological disorders across the globe. \nWe are now searching for effective advocates at national and regional levels to get involved\, in working with us to develop our response to the first draft of the GAP\, and to advocate at all levels for a plan that addresses the real burden of neurological disorders. \nIf you are interested in learning more and getting actively involved\, the OneNeurology Partnership will host\, on June 29th 2021\, a virtual Global Advocacy Workshop where we will: \n\nPresent the first draft of the GAP to advocates worldwide\nPresent the views of the OneNeurology Partnership on the first draft of the GAP\nBring together neurology advocates from across the world (regional and national)\, to gather their perspectives on the GAP – based on their region/disease area/stakeholder group.\nEmpower global advocates with the information\, tools and resources needed to ensure a coordinated response to the GAP consultation via submissions\, regional hearings and outreach to national policy makers.\n\nThe event is open to individual health care professionals\, researchers\, people living with neurological disorders\, their carers or anyone else who is interested in engaging in neurology advocacy. Advocates may also come from the organisations who represent these various stakeholder groups. \nTo cater for all timezones\, there will be two sessions during the day. \nSession 1: 8.30-11am CET or Session 2: 4.30-7pm CET \nSign up before June 20th at this link: https://forms.gle/TReR19f1oCtznGVK9 \nOr find out more at: www.oneneurology.net \n 
URL:https://www.braincouncil.eu/event/oneneurology-global-advocacy-workshop/
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