EBC Sessions at Digitalscience@UNGA75
2020-09-30 12:00 - 16:00 UTC
EBC has been invited to host two side sessions at the upcoming sciencedigital@UNGA75 series of virtual side events within the context of the 75th United Nations General Assembly (UNGA75) in September 2020. The central theme of these activities will be to advance awareness of the role and contribution of science and digital technologies to the attainment of the United Nations Sustainable Development Goals (SDGs).
The objective will be to develop and launch science and digital capacity initiatives and demonstrate global science mechanisms and activities in support of the attainment of the SDGs. Science infrastructures and digital research capacity building are crucial to enable scientists to collaborate at global level to create opportunities for wide-ranging initiatives that can produce innovations to address challenges in the area of health, climate, environment, energy, agriculture, and food, amongst a range of other objectives.
On 30 September, EBC will host the following sessions:
The Potentials of Increased Collaboration in Science: examples from the brain community (12:00-14:00 CET)
Enhancing global collaboration in the domain of research and innovation is key for effectively addressing today’s societal challenges and improving the health and well-being of citizens. This is particularly true for brain disorders, including both neurological and mental conditions, which are widespread and highly disabling diseases that are often difficult to treat. The EU has demonstrated its ability to be an important interlocutor in promoting international research collaboration in a wide range of areas, ranging from problems connected to climate change to issues such as agriculture and energy, which is expected to deliver promising results in the near future. It is therefore crucial to explore how global research collaboration can support brain research in a meaningful way, to the benefit of patients across the globe. This session gathers voices from across the world showcasing their international partnerships and the importance of building and fostering international connections in science, with insight from the European Union, North America, Asia, Oceania, Africa as well as international organisations. Register to attend HERE.

Do the SDGs address the global burden of disease? A focus on regional health and research policies (14:00-16:00 CET)
Co-organised with the European Federation of Neurological Associations (EFNA). Brain disorders, neurological and mental alike, have the highest disease burden. Neurological disorders alone are the leading cause of DALYs and second leading cause of deaths worldwide, affecting one in three people. The leading cause of DALYs by 2030 is projected to be unipolar depressive disorders. Thus, global momentum to address the threat posed by brain disorders is increasing. In 2018 mental and neurological disorders were added by world leaders to the list of priority non-communicable diseases. In 2019 WHO established a “Brain Health” team. In 2020 WHO Member States requested a resolution on Epilepsy and other neurological disorders that can lead to a global action plan. However, the existing high-level commitments, such as Sustainable Development Goals and Universal Health Coverage, have not afforded brain conditions the political priority that they require and fall short on tangible global commitments to reduce their burden. Strategic linkages to these high-level commitments therefore need to be built, laying out a strong foundation for an integrated and all-encompassing approach to brain health. Register to attend HERE.

Below, the programme details:
UNGA75 EBC Sessions - Both Programmes 300920

Brain Innovation Days 2020
2020-10-13 12:30 - 14:30 UTC
The European Brain Council and beLean.net will virtually launch the first Brain Innovation Days on 13 October, 2020, with the full on-site event to be held 12-13 October 2021 in Brussels.
179 million Europeans are currently living with brain disorders and this is to steadily increase as the population ages. Though one in three Europeans are set to live with a brain disease at some point of their life, neurological and mental alike. In addition, it is estimated that brain disorders account for up to 45% of total healthcare budgets and this burden is expected to grow.
Despite the prevalence of brain disorders in Europe, there is currently no disease modifying treatment available to cure a wide range of mental and neurological conditions. Developing treatments that can significantly improve the lives of those living with brain disorders is extremely challenging.
Yet, compared to other disease areas, the pace of innovation in this field has traditionally been hindered by multiple factors, including the complexity of the brain itself. As a result, brain treatments remain insufficient and research is disproportionately underfunded compared to other disease areas. We believe enhanced multi-stakeholder engagement in the brain ecosystem is needed to foster dialogue, exchange knowledge, accelerate investment in research and innovation, facilitate business development and showcase on-going work.
Visit & follow the #BIDays Social Media Channels:

EU Health Summit 2020: Time for action
2020-10-26 13:30 - 17:30 UTC
The COVID-19 pandemic has shown us the importance of cooperation between all sectors and actors to ensure our healthcare systems can function to their best ability in saving human lives.
In 2018, 33 organisations came together under the umbrella of the EU Health Coalition. They jointly developed 20 recommendations for a healthier Europe to promote a shared vision of health in Europe.
This year, it is time for action. For the second edition of the EU Health Summit, all participants will develop implementing actions for policymakers and stakeholders to translate the 2018 recommendations into concrete policy change and improve Europeans’ health and health systems’ sustainability.
Register here to join the discussion on 26 October.

The ESO-WSO Virtual Conference
2020-11-07 - 2020-11-09
The ESO-WSO Virtual Conference will meet the needs of the stroke community and offer major clinical trials, state-of-the-art presentations by renowned clinicians and researchers, and updates on the latest guidelines.
The Virtual Conference will take place on 7-9 November 2020. Virtual sessions will allow live interaction and will be available on-demand in the weeks following the Conference.
The Conference is organized by the European Stroke Organisation (ESO), a pan-European society of stroke researchers and physicians, national and regional stroke societies and lay organisations and the World Stroke Organization (WSO) which aims to reduce the global burden of stroke through prevention, treatment and long term care. WSO is approved by the World Health Organization (WHO) as a non-governmental organization for official relations.

Virtual workshop on good practices for the off-label use of medicines in Sweden and Norway
2020-11-24 10:00 - 11:45 UTC
The use of medicines off-label plays an important role in various areas of medicine as it allows patients to be treated in cases where an authorised drug is not available for a specific therapeutic indication, population or method of administration. Despite its importance, off-label prescription lacks a clear and uniform approach at European level. As elsewhere in Europe, physicians in the Nordics prescribe medicines off-label to treat conditions where there are no approved products on the market. However there is a lack of an aligned strategy among agencies and decision makers when it comes to dealing this matter, with different health care regions in the countries taking different approaches.
To maintain the highest levels of patient safety and minimise any adverse events, while not limiting the access to medications off-label when there is an unmet medical need, a number of organisations put forward the Declaration on Good Off-Label Use Practice (so called GOLUP) as a basis for discussion across Europe. Following a launch event in Brussels, workshops have been held in Rome and Madrid to present the GOLUP and discuss it with local stakeholders and decisionmakers.
SPEAKERS:
• Maria Prigorowsky, Head of Public Affairs, Hjärnfonden, The Swedish Brain Foundation
• Lise Johnson, Chair of the board, MSforbundet, The Norwegian MS Association
• Frédéric Destrebecq, Executive Director, The European Brain Council
• Synnöve Lindemalm, Karolinska University Hospital and representative of ePed (an evidence-based database for the Swedish pediatric population)
• Elisabeth Gulowsen Celius, University of Oslo, Department of Neurology
• Thony Björk, Medicines expert, SPF Seniorerna, The Swedish Association for Senior Citizens
• Dag Larsson, Senior policy expert, Läkemedelsindustriföreningen, Trade association for the research based pharmaceutical industry in Sweden
• Line Walen, Senior Policy Advisor, Legemiddelindustrien, Trade association for the pharmaceutical industry in Norway
• Jenni Nordborg, National Coordinator and Director of the Office for Life Sciences, Government Offices of Sweden
Speakers will provide their remarks in English, followed by a Q&A session where the audience will have the option to intervene in Swedish/Norwegian.

We look forward to welcoming you online: please register your attendance.

Global Webinar Series 2020-2021: Part 3 - Decision for shunt surgery. The role of predictive tests and biomarkers
2021-01-15 18:00 - 19:00 UTC
The Hydrocephalus Society is delighted to announce the Hydrocephalus Society Global Webinar Series on iNPH 2020-2021! A series of 6 monthly webinars will take place, beginning from November 2020 until April 2021. In these challenging times, our duty is to support our community in all ways possible. For this reason, the Hydrocephalus Society board of directors has decided to provide the webinars completely free of charge. They have structured the webinars to favor the European, Asian and American time zones by turns.
Global Webinar Series 2020-2021: Part 3 – Decision for shunt surgery. The role of predictive tests and biomarkers
Chairs
Mark Hamilton
Mats Tullberg
Lectures
1. Predictive value of clinical and radiological features: Jan Malm
2. The role of ancillary tests (CSF TT, ELD, Infusion tests, ICP monitoring): Eric Schmidt

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Brain Innovation Days: From Innovative Ideas to Creative Brain Interventions
2021-01-26 12:30 - 14:30 UTC
The Brain Innovation Days teams is very pleased to announce that the second Brain Innovation Days digital event will be held on 26 January 2021 at 12:30-14:30.
After a successful digital launch on 13 October 2020 kicking off one full year of a packed brain innovation agenda under the overarching theme “Disrupt and rewire: How brain innovation is changing Europe”, the second event will draw focus on the business and start-up world within the brain ecosystem.
This lunchtime interactive session will fall under the theme “From Innovative Ideas to Creative Brain Interventions”. The event will host the first ever Brain Innovation Days Pitch Competition, showcasing start-ups, entrepreneurs and investors in the field. Nine start-ups will go head-to-head to pitch their business in 180 seconds for the chance to win Best Pitch, awarded by a jury of esteemed experts in related fields and the public via voting during the event.
Furthermore, you can look forward to a panel discussion on the challenges faced by innovators in Europe – from idea to business – and the support structures that exist to alleviate and guide the process. Confirmed speakers include representatives from successful European start-ups, leading pharmaceutical companies and EU innovation support mechanisms.
Register for free now here.

Global Webinar Series 2020-2021: Part 4 - Treatment
2021-02-27 11:00 - 12:00 UTC
The Hydrocephalus Society is delighted to announce the Hydrocephalus Society Global Webinar Series on iNPH 2020-2021! A series of 6 monthly webinars will take place, beginning from November 2020 until April 2021. In these challenging times, our duty is to support our community in all ways possible. For this reason, the Hydrocephalus Society board of directors has decided to provide the webinars completely free of charge. They have structured the webinars to favor the European, Asian and American time zones by turns.
Global Webinar Series 2020-2021: Part 4 – Treatment
Chairs
Giorgio Palandri
Uwe Kehler
Lectures
1. Hydrocephalus shunt-valves: Ahmed Thoma
2. Ventriculoperitoneal and ventriculoatrial shunts: Mark Hamilton
3. Lumboperitoneal shunts: Madoka Nakajima
4. ETV in NPH: Richard Edwards

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Value Based Healthcare Conference
2021-03-04 11:00 - 18:00 UTC
The event will be held online on the 4th of March 2021 from 10.00 to 17:00 (UTC+2hours).
Health systems in Europe and around the world are evolving to adapt to the societal and technological changes and the changing health needs as more people live longer with chronic or degenerative conditions. This requires changes in the health systems’ design and new ways of delivering healthcare. Next to reduced mortality, improving general health outcomes and quality of life is gaining importance as the main objective of healthcare.
All stakeholders acknowledge that a shift of emphasis is required from a siloed budget focused approach towards a more holistic health and social care system approach. Future healthcare will be more personalized in all stages of healthcare where an evidence-based integrated approach will be applied with an increased role of patients in managing their own health and care.
The conference aims at raising awareness and knowledge among the healthcare community on the value of patient-centered healthcare.
At the conference, good practices and practical examples will be presented by speakers from Estonia and other countries. These ideas will be focused on developing and implementing patient-centered healthcare approaches.
Participation in the conference is free of charge. Information e-mail will be sent to registered delegates with the link enabling to access the internet environment of the event before the beginning of the conference.
The conference is co-organised by the Estonian Ministry of Social Affairs, Estonian Health Insurance Fund, Estonian Cancer Society, The North Estonia Medical Centre Foundation, Tartu University Hospital, European Federation of Pharmaceutical Industries and Associations (EFPIA) and the Association of Pharmaceutical Manufacturers in Estonia.

Info and registration here.

Patient Engagement in EU-Funded Brain Research Projects (EBC-EFNA-GAMIAN-Europe Brain Awareness Week Event)
2021-03-16 12:30 - 14:00 UTC
Brain Awareness Week 2021
EBC in partnership with EFNA & GAMIAN-Europe
Patient Engagement in EU-Funded Brain Research Projects
Digital Event – 16 March, 12:30-14:00
Patient engagement in research is an approach that involves meaningful and active collaboration with patients in the governance, priority setting, conducting and knowledge translation of research. While patient engagement is becoming increasingly popular and vital prerequisite in research projects, many researchers are still unsure or hesitant in the involvement of patients in their work and why such engagement is of value. The process is unclear to many and how to fully involve patients can be unclear. However, many patients are keen to be part of research – “nothing about us without us” –arguing that no research can be fully done without direct insight from the people actually living with these conditions every day.
For some time now, the European Commission, through its research programmes and related initiatives, has been increasing its encouragement of involving patients in research, particularly within the projects it funds. The Responsible Research and Innovation (RRI) approach has been highlighted throughout the objectives of the EU Horizon 2020 Programme. In health research this means to put the expectations of patients and society at the heart of research programs. European initiatives such as the Innovative Medicines Initiative (IMI) have spearheaded the growth of involving patients in European research, encouraging patient involvement in their activities and project, and involving patients as speakers and panellists in their events and consultations. Furthermore, H2020-funded projects such as MULTI-ACT were launched with the aim to increase the impact of health research on people with brain diseases and to create and implement a new model allowing for the effective cooperation of all relevant stakeholders.
However, most patients and patient representatives still feel like not enough support is given to have their voices fully heard in research—requests and demand for involving patients is growing but a pool of “patient experts” is still lacking. The discussion needs to shift from “we need to show that patients are on board” to “how can we best involve patients and why/how are we involving them to the full benefit for the research conducted”. “What can be done concretely in EU funded health research projects to enforce patient engagement”? This needs to be more than a “box ticking exercise”.
This Brain Awareness Week looks to explore the current state of patient engagement in EU-funded Brain Research projects, looking at IMI and MULTI-ACT as concrete examples and solutions and analysing in discussion with key officials what has been done and what can still be done in order to guarantee change.
See programme and concept note included below. Registration is now open HERE.
Brain Awareness Week-Programme
Download the programme HERE.

Global Webinar Series 2020-2021: Part 5 - Complications and how to handle them
2021-03-19 18:00 - 19:00 UTC
The Hydrocephalus Society is delighted to announce the Hydrocephalus Society Global Webinar Series on iNPH 2020-2021! A series of 6 monthly webinars will take place, beginning from November 2020 until April 2021. In these challenging times, our duty is to support our community in all ways possible. For this reason, the Hydrocephalus Society board of directors has decided to provide the webinars completely free of charge. They have structured the webinars to favor the European, Asian and American time zones by turns.
Global Webinar Series 2020-2021: Part 5 – Complications and how to handle them
Chairs
Lawrence Watkins
Mats Tullberg
Lectures
1. Infections. Antibiotics impregnated catheters: Mark Hamilton
2. Shunt failure/Shunt obstruction: Giorgio Palandri
3. Overdrainage: Uwe Kehler

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MULTI-ACT Final Conference: “The MULTI-ACT Model: The Path Forward for Participatory Governance in Health Research and Innovation”
2021-03-23 14:00 - 17:00 UTC
MULTI-ACT Final Conference
“The MULTI-ACT model: the path forward for participatory governance in health research and innovation”
23 March 2021, 14:00 – 17:00 CET

After years of work, the outcomes of the MULTI-ACT project will be presented at the Final Conference, “The MULTI-ACT model: the path forward for participatory governance in health research and innovation”, to be held virtually on 23 March 2021.
The EU-funded MULTI-ACT project aims to increase the impact of health research on people with brain diseases. It has worked to create and implement a new model allowing for the effective cooperation of all relevant stakeholders, which will be applicable in defining the scope of health research as well as new metrics for the evaluation of its results. The MULTI-ACT project has worked with patients and patient organizations, academics, private and public stakeholders to develop brand new tools to assess the value of research.
Among these tools, the consortium has produced a governance model, a roadmap for patient engagement and impact indicators along five dimensions to foster stakeholder engagement in health research and innovation, which will be presented during the conference. Furthermore, the MULTI-ACT online toolbox will be presented and available for organisations to conduct health research with a multi-stakeholder and co-accountable approach.
EBC has been involved in a number of work packages within the MULTI-ACT project and is pleased to be leading the organisation of the Final Conference. Stay tuned for more details: registration will open at the beginning of March. For programme details, please visit the dedicated Event Page.
Learn more about the MULTI-ACT project by visiting: https://www.multiact.eu/, where a number of project brochures, videos, factsheets and full deliverables are shared!

EPA Congress
2021-04-10 - 2021-04-13
In light of the continuing COVID-19 pandemic and its likely impact on travel restrictions and physical distancing requirements well into 2021, the EPA has decided to transform the 29th European Congress of Psychiatry into an innovative online experience.
EPA Virtual 2021 will take place as planned between 10 – 13 April 2021.
Many of you joined the EPA for its first virtual congress in July 2020, and the EPA will once again adapt the participant experience to the online world in order to offer the mental health community the possibility for educational exchanges, scientific news and best practice updates, while protecting the safety and well-being of all participants.
EPA Virtual 2021 will allow for even more live interaction during each session, as well as facilitate contacts with our industry partners and European institutions and bodies that regularly work together with the EPA for scientific collaborations, projects and advocacy activities.
If you have never attended an EPA congress, this is the perfect opportunity to see what our event is all about.
With no travel plans to consider and the flexibility to fit sessions around your professional and personal obligations, accessing all the scheduled sessions in their live and on-demand formats through our dedicated platform will be more convenient than ever. You’ll be able to take part in sessions in the morning and see patients in the afternoon, making the transition from ‘being’ at the congress to implementing new ideas seamless.
In addition, congress sessions will be available throughout the event dates and in the following months, ensuring your continued access to all the latest updates in the field of European psychiatry.
The transformation to an entirely virtual experience will allow us to unlock new opportunities together and make the congress even more accessible to a worldwide audience.
Keep an eye out for a new virtual congress look, a new pricing structure, and new programme announcements in the coming weeks.

EPA Forum on “Quality Indicators of Services and Care for Mental Health in Europe, from Clinician to Patient Perspective: A Paradigm Shift?”
2021-04-10 10:00 - 11:30 UTC
The European Psychiatric Association (EPA) will hold its 7 th virtual Forum on Saturday 10 April from 9:00 to 11:30 CEST.
First introduced in 2015, the EPA Forum traditionally precedes the official opening of the annual European Congress of Psychiatry. This event gathers together EPA members, European organisations, stakeholders and policy makers to present and discuss matters of relevance in the field of mental health care.
Under the title “Quality Indicators of Services and Care for Mental Health in Europe, from Clinician to Patient Perspective: A Paradigm Shift?“, this year’s programme will be centred around the importance of quality indicators and the patient’s role in assessing mental health care. The 2021 EPA Forum will allow live interaction with the audience and will be broadcasted on the EPA virtual Congress platform and on the EPA Congress website. Find more information about the speakers and connection details at: https://epa-congress.org/epa-forum-2021/ .

EBRA at EPA Virtual Congress
2021-04-12 15:30 - 17:00 (Europe/Paris)
The European Brain Research Area (EBRA) will hold the workshop “A Catalysing Initiative for Brain Research Stakeholders to Streamline Brain Research across Europe” in the context of the 29th European Congress of Psychiatry.
The workshop will take place on Monday 12 April from 15:30 to 17:00 CET on Channel 5.
Info & registration to the congress here.

7th National Brain Councils Academia
2021-04-15 15:00 - 16:00 UTC
HERA and NBCs roles in strengthening the European Health Union
This year this 7th NBCs Academia, under EBC guidance, will express its support to the creation of the European Health Emergency Preparedness and Response Authority (HERA), a central element for strengthening the European Health Union.
During this one hour webinar, highlights will also be made on brain damage caused by COVID-long and its public health burden. The webinar will host speakers from the DG Health of the European Commission, members of the European Parliament and national policymakers.
Register here.

Neuroinformatics Assembly
2021-04-19 - 2021-04-29
The INCF Assembly 2021 aims to provide the neuroscience community-at -large with approaches that can be used today to implement the FAIR principles in their research. It also aims to provide tool developers and infrastructure providers with an opportunity to interact with the user community and to interact with other practitioners to advance the field of neuroinformatics.
The 2021 INCF Assembly will address topics around FAIR neuroscience such as:

FAIR approaches for neuroscience in general, neuroimaging, electrophysiology, and computational neuroscience
Electrophysiology, and computational neuroscience
Open innovation and intellectual property
Data science
Showcase of tools, infrastructures
Information about ongoing work in INCF councils and committees
Funders and publishers roundtable
Workshops on developing standards and a roadmap for FAIR neuroscience

The INCF Assembly is the only international meeting that focuses on providing researchers with hands-on training experiences and enabling interaction with software developers and infrastructure providers through training workshops, special interest group meetings, and the INCF Congress on Neuroinformatics.
For info and registration, please visit the website.

EBC trains early-stage researchers to become a voice for neuroscience research throughout their careers
2021-04-20 09:30 - 11:30 UTC
In the context of the Marie Skłodowska-Curie actions on Innovative Training Networks funded by the Horizon 2020 programme, EBC organised a workshop on the role of science in the European policy-making process. The workshop addressed to a group of early-stage researchers aimed to empower them with ways to become a voice for neuroscience research throughout their careers. Participants were introduced to the European policy-making environment and EU funding mechanisms. They took part in mock-up sessions engaging with policy makers on different scenarios and could also interact in a panel discussion on career opportunities in science policy and advocacy.
More information about the ASCTN Training can be found on their website.

Global Webinar Series 2020-2021: Part 6 - Outcome
2021-04-24 11:00 - 12:00 UTC
The Hydrocephalus Society is delighted to announce the Hydrocephalus Society Global Webinar Series on iNPH 2020-2021! A series of 6 monthly webinars will take place, beginning from November 2020 until April 2021. In these challenging times, our duty is to support our community in all ways possible. For this reason, the Hydrocephalus Society board of directors has decided to provide the webinars completely free of charge. They have structured the webinars to favor the European, Asian and American time zones by turns.
Global Webinar Series 2020-2021: Part 6 – Outcome
Chairs
Mark Hamilton
Mats Tullberg
Lectures
1. Clinical symtoms, short- and long-term: Kerstin Andren
2. HRQoL, mortality, cost-effectiveness: Mats Tullberg
3. When is reprogramming of an adjustable valve indicated?: Laurence Watkins

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Brain Innovation Days: Fast-tracking brain innovation in times of COVID-19
2021-04-27 12:30 - 14:00 UTC
The last 14 months have been a most testing time for the world in general and for global health in particular. COVID-19 took the world by surprise as weaknesses were exposed in public health systems’ preparedness to face pandemics and we continue to face the consequences over a year on. However, the emergence of COVID-19 has also succeeded in accelerating innovation in science, treatments, healthcare and health management.
Positive results have been observed where a stronger emphasis on collaboration among different players was placed. From researchers to clinicians to community to biotech, public-private partnerships were strengthened, and, thanks to increased responsiveness from authoritative bodies, more agile ways of fast-tracking innovation were set in motion.
The purpose of this Brain Innovation Days digital session, the 3rd in the series, is to explore the positive direct and indirect results of COVID-19 pandemic response and research on the brain innovation ecosystem. The session will feature key opinions leaders, patient testimonials, clinicians, representatives from the EU and WHO level and the industries that were forced to adapt to this rapid change of pace in innovation.
Register now!

“Brain and machine: Improving MS care in a digital age”
2021-05-27 11:00 - 12:15 UTC
The rapid development of COVID-19 vaccines is perhaps the clearest example of cumulative medical innovationㅡand its undisputed power to transform lives. But scientific innovation has not been limited to the race for immunity. From telemedicine and portable diagnostics to digital therapeutics and blockchain, digital technologies are reshaping health-care delivery―and could play a transformative role in the future.
This is nowhere truer than with multiple sclerosis (MS), a neurological condition for which there is currently no cure. From disease-modifying treatments to improved tools for monitoring disease activity, significant progress has been made in improving the quality of life of people affected by MS. Yet there is still a long way to go to better understand and respond to the disease. Digital products such as remote-monitoring tools and wearable devices and sensors offer the potential to deliver personalised and improved care to those affected by MS. But accelerating the pace of innovation requires effective policies and sufficient investment for research. Above all, the needs of patients must be at the forefront, with open dialogue between policymakers, industry leaders and health professionals.
This digital event, supported by Biogen, EBC and EU40, will convene biotechnology leaders, policymakers, medical professionals, advocacy groups and patient advocates to examine how the digital revolution is transforming health-care delivery. In the approach to World MS Day, recognized on 30 May 2021, the event will take a focused look at the progress that has been made in treating MS, and will examine how to accelerate further advances.
Read more here and register now!

Open co-design workshop on next generation tools to manage Amyotrophic Lateral Sclerosis and Multiple Sclerosis
2021-06-03 10:30 - 13:00 (Europe/Brussels)
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.
The 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.
Click here to view workshop details, registration link and agenda.
BRAINTEASER_open co-design workshop agenda_FINAL_3rd June 2021

Value of Treatment 2 Synthesis Meeting
2021-06-08 13:00 - 17:30 UTC
The 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.

Study background
Value of Treatment (VOT) for brain disorders
The 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.
Value of Treatment (VOT 2): a second round of case studies
In 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.

Click here to view the programme
Download the event report

Please see below the final agenda:
AGENDA VOT2 SYNTHESIS MEETING 8 June 2021 - FINAL

EMSP 2021 Virtual Conference
2021-06-09 - 2021-06-11
The EMSP 2021 Annual Conference will be held virtually and will be taking place online on the 9th, 10th and 11th June.
The 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.
The #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.
Building 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.
For more info, please visit: https://emspconference.org/

Myalgic Encephalomyelitis in Europe: Roundtable of European Stakeholders and Policymakers
2021-06-09 13:00 - 16:00 (Europe/Paris)
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.
The 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.
The meeting will also include discussions on the implications of Long COVID – including similarities to ME/CFS.
For more information, click here.

EBC at the Africa - Europe Science and Innovation Platform
2021-06-15 17:30 - 18:30 (Europe/Paris)
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).
AERAP will organise the “Africa-Europe Science and Innovation Summit” on the 15th to 17th of June 2021.
Monica 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.
More information on the panel here.

Patient safety and informed consent: The importance of good off-label use practices
2021-06-17 14:30 - 16:00 (Europe/Paris)
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.
Five 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.
The 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.
Register here
Discover the declaration
Speakers
Cyrus Engerer
Member of the European Parliament
Graduated 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.
Other 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
most 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.
Following 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.
Cyrus 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
Consultative Committee which was tasked with the introduction of a number of equality laws in Malta.
He is 39 years old and is the partner of Randolph De Battista.
Coriene Catsman-Berrevoets
European Paediatric Neurology Society (EPNS)
Coriene 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.
She 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.
She 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.
Marc Dooms
University Hospitals Leuven
Mr. 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.
Marc 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.
Mr. 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.
Frédéric Destrebecq
European Brain Council
Frédéric 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.
Prior 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.
Adela Maghear
European Cancer Patient Coalition
Adela 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.
With 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.
In 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.
Her 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.
In 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.
Jana Hlaváčová
European Multiple Sclerosis Platform’s
Jana 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.

She 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.
She 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.

7th Congress of the European Academy of Neurology - Virtual 2021
2021-06-19 - 2021-06-22
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.
Once 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.
More info on the website.

EAN2021 Scientific Theatre - The Value of Treatment Project: The Value of Early Coordinated Care for Patients Affected by Rare Neurological Diseases
2021-06-21 11:30 - 11:50 UTC
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.
Motivated 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.

EBRA at EAN: Special Session 14: The European Brain Research Area
2021-06-22 13:00 - 14:30 UTC
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.
EBRA clusters, partners, policymakers, clinicians and patient representatives will participate discussing among other topics:

The priorities, gaps and enabling actions in brain research in Europe
How to promote European brain research in the world?
Understanding the importance of operational coordination of brain research in Europe
Understanding the value of coordination in brain research communities
Activities to enhance coordination in brain research

To have more information on the Congress and register for the event, please visit the official website.
