Tag Archives: MEP

RETHINKING MS project presented at European Parliament

On 6 November 2019, the European Brain Council (EBC) and The Health Policy Partnership (HPP) were able to present preliminary reports from the RETHINKING MS project during a meeting of the MEP Interest Group on Brain, Mind and Pain.

Attendees were welcomed by Joke Jaarsma, European Federation of Neurological Associations (EFNA), and Deirdre Ryan, Pain Alliance Europe (PAE) – the group’s coordinating organisations. Two of the group’s MEP co-chairs addressed the audience: Tilly Metz MEP (Greens, Luxembourg) and Jaroslaw Duda MEP (EPP, Poland). They both stressed their personal and professional interest in this topic – and referenced figures which highlight why these disease areas are such a cause for concern. MEP Duda reference a recent study which estimated neurological disorders to be the world’s largest cause of disability in 2015 and the second largest cause of global death. He also spoke of how 179 million people in Europe live with a brain disorder, and an additional 150 million with chronic pain. MEP Metz acknowledged that member states retain large competencies in the area of health, but she stressed that EU action can provide much added value.

EBC and HPP have been working together to create RETHINKING MS, a new project calling for change in how MS care and support is organised. The project began in 2018. EBC and HPP collaborated with experts from across Europe to build an interdisciplinary consensus around practical and sustainable policy responses to MS at the European level. Building on the findings from the 2017 Value of Treatment report, this pan-European policy narrative identifies key challenges in MS care and makes recommendations for how they can be addressed.

As different countries face specific challenges, it is important to consider the national context when advocating for policy change. For this reason, RETHINKING MS also takes an in-depth look at Denmark, Italy, Romania and Spain. The dedicated reports on each country, now available for Denmark, Italy and Spain, provide a more specific analysis of MS policy, care and support available for people with MS in each country.

Opening presentations on European disparities in access to neurological and pain treatment were from Neil Betteridge, European Alliance for Patient Access (EAFPA) and Donna Walsh, EFNA. Both explained how access issues are increasingly focused on appropriate services, as well as access to innovative but expensive therapies.

The country profiles were presented with the support of the speakers previewing the findings of the RETHINKING MS project. Pedro Carrascal (President, European Multiple Sclerosis Platform), Prof. Per Sorensen (Neurologist from Denmark) and Prof. Jenny Freeman (Rehabilitation Specialist from the UK) presented individual case studies in MS, highlighting the disparities in MS care and support across the EU and what possible policies could be put in place to help achieve equitable access to care.

Following these presentations on the MS case study, a moderated discussion was opened by EBC Executive Director, Frederic Destrebeq, with discussion with a wide group of key stakeholders: Professor Mario Battaglia, President of the Italian Association of MS [AISM]; Valentina Polylas, Director of the European Regional and Local Health Authorities; Moira Tzitzika, MS Psychologist in Greece and expert for the RETHINKING MS project; Dr Brona Fullen, President Elect, European Pain Federation; Dr Stanimir Hasardzhiev, Secretary-General, Patient Access Partnership [PACT]; and Sylvain Giraud, Head of Unit, DG SANTE B1, Health Systems, at the European Commission.

The full detailed event report is available on the Brain Mind Pain Interest Group website.



EBC, EFNA & EAN send joint open letter to EU leaders, calling for increased prioritisation of neurological/brain health in EU policies

The European Brain Council has joined members European Federation of Neurological Associations (EFNA) and European Academy of Neurology (EAN) in sending an open letter to EU leaders, making a strong case for increased prioritisation of neurological/brain health in EU policies and calling for concrete measures to be undertaken to counteract the increasing burden of brain disorders.

We know from studies that at least 1 in 3 people will experience a brain disorder in their lifetime, with a total cost of brain ill-health in Europe alone estimated to be €800 billion each year – more than the cost of all major disease areas combined. The Global Burden of Disease Study Group found that neurological disorders formed the world’s largest cause of disability adjusted life years in 2015 and the second largest cause of global death, i.e. 16.8%. Brain disorders constitute the most prevalent disabling and burdensome diseases among NCDs in the European population. Evidence also shows that brain research has the highest potential in terms of return on investment, far exceeding the return in any other area. Therefore it is important that brain health receives far greater attention by the new European Commission and Parliament.

This letter has been sent to Dr Ursula von der Leyen, European Commission President-elect, Ms. Stella Kyriakides, Health Commissioner-designate, Ms. Mariya Gabriel, Commissioner-Designate for Innovation and Youth, Mr David Sassoli, European Parliament President and other policymakers.

The full letter can be read here.



EBC-endorsed “Alzheimer’s Policy toolkit for Members of the European Parliament” released

Alzheimer’s disease (AD) – the most common cause of dementia – is one of the most significant medical and societal challenges of our time. It does not discriminate and affects everyone, across all generations – from the people who develop the condition, to the families that care for them and the taxpayers who fund health services.

By providing facts and figures, polling findings and by highlighting what you can do on EU and national level to aid people with AD today across the EU, this toolkit is designed to help you promote change by driving the policy debate to benefit people with AD, their families, caregivers and society as a whole. In particular, you will find suggested steps that you can take to refresh the debate on EU level and, crucially, shape policy on national level – where change has so far been less forthcoming – to improve AD/dementia services and empower people with AD/dementia to live better lives.

Read the full report below:

MSD Policy Toolkit April 2019 WEB

EBC holds Brain Awareness Week event on “Mood and Food: Exploring the gut-brain connection”

Though Brain Awareness Week is still approaching, held next week on March 11-15, the European Brain Council held its annual event early this year, ensuring access to the European Parliament in Brussels and an audience of policymakers and the general public.

This year, the event focused on “Mood and Food: Exploring the gut-brain connection”, examining the connection between mood and food, exploring the relationship between what you eat and how it can affect your mood and daily function.

Host MEP Marian Harkin welcomes the room

Our host, MEP Marian Harkin (ALDE, IE) opened the event with a warm welcome and supportive words for the work of EBC  and like-minded organisations, having hosted a few brain-related events in the European Parliament that day and throughout the week in light of Brain Awareness Week next week, as well as support for the work being done to raise awareness on the subject of brain disorders and brain research.

“I think when we speak about research, sometimes it can be quite narrowly focused or maybe on a particular disease, but the research in this field [gut-brain axis] affects every single one of us here, our families, our communities, in fact, every citizen in the European Union.” Ms Harkin stated, continuing with sharing her own personal interest in the field of research.

“As we are in the European Parliament, it is important also to mention the role that Horizon 2020 and Horizon Europe funds can play in prioritizing brain research.”

MEP Jose Inacio Faria (EPP, PT) also joined us for the event, adding that he, too, has an interest in the field and learning more from the speakers. “I always say: what we can spend on prevention we can save on treatment and also ensure healthier citizens.”

EBC Vice-President, Prof. Patrice Boyer, echoed Ms Harkin’s welcome on behalf of EBC and spoke a few words on the current work of EBC and the importance of such awareness raising events. He also alerted the room to the official launch of the EBC Election Manifesto, which was first available that evening and the continued dissemination of the Brain Mission call for Horizon Europe.

Our first speaker was Alejandro Arias Vasquez,  who leads a research group that aims to identify the biological mechanisms underlying the way the brain functions in health and disease, with strong emphasis on neurodevelopmental disorders at Radboud University Medical Centre in the Netherlands. Alejandro spoke on the role gut bacteria can play in the risk of psychiatric diseases and described the results of some of the studies he is carrying out to investigate this. He is the coordinator of the H2020 Eat2beNICE consortium on the effects of nutrition and lifestyle on impulsive, compulsive and externalizing behaviours.

Alejandro Arias speaks on his current research on biological mechanisms underlying the way the brain functions in health and disease

“The project I’m involved in is trying to determine, scientifically – with robust evidence – which type of dietary interventions affect your brain. We’re working towards identifying how, for example, restriction-elimination diets work for ADHD, how the Mediterranean diet works for cognitive performance in people 55 years plus, how probiotics affect the risk of aggressive behaviour in adolescents or how nutritional supplements can help people with impulse control problems. These are all very relevant societal problems. And there’s already some interesting data; already testing if you should eat rice, or potatoes, or greens, or maybe reds? The data is out there. We’re still not completely there in order to answer clinically, but the progress is amazing.”


Kimberley Wilson wants to encourage the general public to improve understanding of their own brain and how their lifestyles play a role in their brain health



Our second speaker, Kimberley Wilson, is a nutrition trained Chartered Psychologist, specialising in Whole Body Mental Health.  Kimberley spoke on the need for increased public engagement  in the field of nutrition, wellbeing and how they affect our brain and minds, as well as how we translate research to clinical practice.

“We really need to start getting people thinking about their brains much earlier in life. We need to start engaging younger people in thinking about their brains. It’s not about flat abs, it’s about strong minds. In essence, somehow, we need to make the brain more ‘sexy’. My personal campaign is to engage people with good quality research and to empower people to use their lifestyle factors to improve their brain health.”

Her clinical work looks at the role nutrition and lifestyle play in our mental health, including disordered eating, functional disorders of the gut-brain axis (IBS) and our emotional relationships with food. Her private clinic, Monumental Health, integrates psychological therapy with evidence-based nutrition and lifestyle advice to effectively treat mental health concerns.

It was clear the audience was up for a discussion, with many questions being fielded to the two speakers after both had spoken, with the conversation being led by Prof. Boyer.

Thank you to all who attended the event and to our partners in organization, the European Dana Alliance for the Brain. For further information on the event, please contact Stephanie Kramer (projects@braincouncil.eu)




BAW’ 19 Event – “Mood and Food: Exploring the gut-brain connection”

One of EBC’s annual activities is to hold an outreach event for Members of the European Parliament and the general public during the Brain Awareness Week (BAW). This global campaign is held in March every year and aims to increase public awareness on the progress and benefits of brain research.

This year we focus on “Mood and Food: Exploring the gut-brain connection”. Join us in the European Parliament in Brussels (JAN 3Q Brasserie) on the 6th of March from 18:00 to 20:00.

This Brain Awareness Week event will focus on the connection between mood and food, exploring the relationship between what you eat and how it can affect your mood and daily function. Held as a reception this year, the event will combine food, informal presentations and discussion with experts in this growing field of research.

This event is kindly hosted by MEPs Marian Harkin (ALDE, IE) and held in partnership with the European Dana Alliance for the Brain (EDAB) and the Federation of European Neuroscience Societies (FENS).

We look forward to welcoming our speakers, Dr. Alejandro Arias-Vasquez (New Brain Nutrition Project),  Kimberley Wilson (Monumental Health, NHS Mental Health Trust Governor) and moderator Prof. Patrice Boyer (EBC Vice President).




Registration is now closed*

*Entry is still possible for those with European Parliament access badges






Registration now open for BAW 2019 event: “Mood and Food: Exploring the gut-brain connection”

One of EBC’s annual activities is to hold an outreach event for Members of the European Parliament and the general public during the Brain Awareness Week (BAW). This global campaign is held in March every year and aims to increase public awareness on the progress and benefits of brain research.

This year we focus on “Mood and Food: Exploring the gut-brain connection”. Join us in the European Parliament in Brussels (JAN 3Q Brasserie) on the 6th of March from 18:00 to 20:00.

This Brain Awareness Week event will focus on the connection between mood and food, exploring the relationship between what you eat and how it can affect your mood and daily function. Held as a reception this year, the event will combine food, informal presentations and discussion with experts in this growing field of research.

This event is kindly hosted by MEPs Marian Harkin (ALDE, IE) and Jose Inacio Faria (EPP, PT) and held in partnership with the European Dana Alliance for the Brain (EDAB) and the Federation of European Neuroscience Societies (FENS).

We look forward to welcoming our speakers, Dr. Alejandro Arias-Vasquez (New Brain Nutrition Project),  Kimberley Wilson (Monumental Health, NHS Mental Health Trust Governor) and moderator Prof. Patrice Boyer (EBC Vice President).

CLICK HERE to register your attendance!

Event Report: “The Socioeconomic impact of Alzheimer’s in Europe”

On the 25th of September, EBC held its latest event in the European Parliament, this time building on the Value of Treatment‘s work on Alzheimer’s and The Socioeconomic impact of Alzheimer’s in Europe. This event was an opportunity to further present the EBC Value of Treatment project, particularly the work and findings of the Alzheimer’s Disease working group.

The event was kindly hosted by MEPs Heinz K. Becker (EPP, AT) and Marian Harkin (ALDE, IE), both members of the European Alzheimer’s Alliance, moderated by Geoff Meade and chaired by EBC President, Prof. Monica Di Luca, and hosted an excellent line-up of expert speakers and roundtable participants, who each presented and led fruitful conversation around the future of Alzheimers research, patients and carers as well as the impact the disease has and will have on society.

Dr. Ron Handels and Prof. Philip Scheltens, members of the VoT Alzheimer’s Working Group, presented their work on the potential health-economic impact of treating Alzheimer’s and the patient journey for people living with Alzheimer’s. Mr Nis Peter Nissen then continued with a national insight, speaking on the cost of informal care of Alzheimer’s in Denmark.

The roundtable brought together key stakeholders in the Alzheimer’s and neurology communities, including leading academic and policy experts on the socioeconomic burden of Alzheimer’s from organisations such as the OECD and the European Commission.

The full agenda can be looked back on HERE.

The event also marked the conclusion of the “What if” series of policy roundtables, which launched in the European Parliament in September of last year with an event on the The Right to Dignity: Overcoming the stigma and inequalities faced by people with Alzheimer’s and a second meeting in January 2018 on Overcoming the ethical challenges of early detection and diagnosis.

The discussion and policy recommendations of last week’s and previous roundtables will now be captured in a White Paper on driving the policy agenda to optimise care for people with Alzheimer’s disease in Europe today and tomorrow. The White Paper, collaboratively developed and endorsed by MSD, EBC, EFNA and other stakeholders, will be launched at the meeting of EFNA’s Brain, Mind and Pain MEP Interest Group on 21 November 2018. As we enter campaigning season for the European Parliament 2019 elections, the White Paper will be a valuable tool to support advocacy activity focused on delivering better policy today and tomorrow for people with Alzheimer’s on EU and national level.

More can be read about the Value of Treatment, the Alzheimer’s findings (Posters / Report), and follow the launch of the white paper and all the latest EBC news and events here online and on Twitter.





Brain Awareness Week 2018: Expanding brain research in Europe – Education, Behaviour and Brain Development

On 15 March 2018, EBC will once again hold an event at the European Parliament in Strasbourg on the occasion of Brain Awareness Week 2018. Based on our highly successful outreach event at the Parliament last year, which included a good showing of policymakers, researchers and the general public who openly interacted with each other and the speakers during the hour of open discussion following the presentations, we will bring a similar event to Strasbourg once again.

This event is organised in cooperation with the Federation of European Neuroscience Societies (FENS), the European Dana Alliance for the Brain (EDAB), the Belgian Brain Council (BBC), with support from Neuropôle de Strasbourg and Le Bureau Europe Grand Est.

Co-hosted by MEPs Anne Sander (France, EPP), Daciana Sârbu (Romania, S&D) and Lieve Wierinck (Belgium, ALDE), the event will focus on the continued need for expansion of brain research in Europe, this time with specific focus on education, behaviour and brain development. The speakers list consists of highly-lauded scientists from the various fields of expertise: Prof. Albert Gjedde –  University of Copenhagen, Prof. Steven Laureys – University of Liège and Prof. Gaia Novarino – FENS Kavli Scholar, Institute of Science and Technology Austria.

Please see the Save the Date below for further information, and CLICK HERE TO REGISTER NOW!

The event will take place in the European Parliament, Room LOW N3.3 from 10:00-12:00.


BAW 2018 Invitation – FINAL






















The Value of Early Intervention in Brain, Mind and Pain Conditions event – 12 July 2017

On 12 July 2017, the meeting of the MEP Interest Group on Brain, Mind and Pain, and the Interest Group on Mental Health, Well-being and Brain Disorders took place in the European Parliament (Brussels) in partnership with EBC. The event was hosted by MEPs Jana Žitňanská, Marian Harkin, Michał Boni and Marek Plura.

The well-attended and fruitful event was held under the title “The Value of Early Intervention in Brain, Mind and Pain Conditions”,  and included two panel discussions:

The first panel addressed the conclusions and recommendations of EBC’s Value of Treatment research project and White Paper, and explored the value of early intervention, using the case-studies of four disorders – presented from various stakeholder perspectives –and how the EU can support the solutions identified. The panel, led by Paul Arteel (GAMIAN-Europe), included presentations from the Stroke (An epidemiologist and neurologist’s perspective – Dr. Alistair Webb, UK), Multiple Sclerosis (A public health and policy’s perspective – Ms. Vinciane Quoidbach, Belgium), RLS (A patient’s perspective – Ms. Joke Jaarsma, Netherlands) and Schizophrenia (Families’ perspectives – Ms. Aagje Ieven, EUFAMI, Belgium) working groups.

The second panel, chaired by Ann Little, President of the European Federation of Neurological Associations (EFNA), focused on the possible next steps in the Value of Treatment project – exploring the application of the developed methodology to other disease areas e.g. rare diseases or chronic pain, as well as a future focus on interventions such as rehabilitation.

MEP Michał Boni began the discussion by discussing a move and need towards Integrated Care, and Ms Vinciane Quoidbach, Public Health Policy, Research Project Manager Value of Treatment Research Project at EBC presented the Value Proposition of a second VoT project.

The panel then continued into a discussion on potential case studies, addressing unmet needs, with presentations on rare diseases (such as Ataxia): A neurologist’s perspective – Prof. Paola Giunti, UK, Myalgic Encephalomyelitis: A patient perspective – Nancy van Hoylandt, Belgium and Chronic Pain: A researcher’s perspective – Dr. Nick Guldemond, University of Rotterdam.

Before the panels concluded with a Q&A from the audience, Guest speaker Stephane Hogan, Head of Neuroscience, DG Research & Innovation gave his report on the work of the Commission and the continued support and dedication to brain research.

Conference Report: Value of Treatment for Brain Disorders in Europe

Brussels, Belgium
6 July 2017


On 22 June, the EBC research project on the Value of Treatment of Brain Disorders (VoT) in Europe came to a close with the launch of a policy white paper including the data collected by 9 expert working groups.

Covering a range of mental and neurological disorders, the VoT study examined health gains and socio-economic impacts of best health interventions (pharmacological and psychosocial alike), and addressed the current early diagnosis and the treatment gap of the various brain disorders. The conference itself focused on addressing the burden of diseases and issues in the current health care system, the health services delivery and care pathways design and proposing evidence-based and cost-effective solutions to achieve high value for patients.

With the completion of the first VoT project, EBC provided the necessary policy recommendations to address the treatment gap and its consequences for patients and citizens at large.

EBC President Prof. David Nutt welcomed the full room by introducing the details of the project, and that the working groups worked on how to “close the treatment gaps for brain disorders”. “EBC is not only looking at the socio-economic impact and value of healthcare interventions, but is also emphasizing how timely care pathways need greater integration and how better collaboration can be achieved in the future for the benefit of those living with, or at risk of, a brain disorder,” Prof. Nutt pointed out.

Prof. Nutt went on to co-present the project with Prof. Günther Deuschl, President of the European Academy of Neurology, to discuss its intentions, development and findings. VoT wanted to explore bridging the early diagnosis and treatment gap, as despite the escalating costs of brain disorders, numerous needs of individuals at risk and patients are unmet, and around 8 out of 10 people living with a brain disorder remain non-treated or inadequately treated although effective treatments exist. Health services, generally, remain quite fragmented, and working groups collectively found that more patient-centred and seamless, interdisciplinary care is still needed. Furthermore, though there has been significant progress in brain research over the last 50 years, and basic and translational research are at a threshold for new findings with a major impact on treatment, continued investment into brain research remains as important and necessary as ever.

Prof. Patrice Boyer, EBC Vice-President, elaborated on both EBC and VoT’s Call to Action for more research on brain disorders and the need for a healthcare system transformation to implement a seamless, coordinated system of “care networks” at national, regional and local level. He continued to summarize the key policy recommendations that the VoT white paper concludes with: implementing best practice to improve the patient’s flow at healthcare level; basic, clinical and translational research is imperatively needed, now more than ever at research level; and converging action towards EU wide brain plan and promoting the set-up of knowledge hubs on a health policy and health system governance level.

Keynote speaker Mr. Martin Seychell, Deputy Director-General, Directorate General for Health and Food Safety, European Commission, remarked that sustainability of healthcare is an increasing issue, stating that there is “no social Europe without health”. Alongside second Keynote Speaker Dr. Line Matthiessen, Acting Director, Health Directorate, Directorate General for Research & Innovation, European Commission, the two pledged the EU Commission’s continued support for brain research.

The European Commission has significantly increased funding for research on brain diseases, with 5.3 billion euro ear-marked between 2007 and 2017. However, this sum, shared between the 165 million Europeans with brain disorders, works out at just over 3 euro per person per year.

On the side of economic analysis, EBC partnered with the London School of Economics (LSE) to produce economic evidence on the value of treatment of brain disorders to inform decision-making. Prof. Martin Knapp of LSE presented the “very strong” economic case for investing in treatment for brain disorders after carrying out an overarching analysis of the economic evaluation and case studies. Closing treatment gaps is widely beneficial – for patients, families, providers, payers, policy-makers – and the economic arguments need to be seen alongside other essential elements in shared decision-making, especially by these various stakeholders.

The project and all communication from the conference highlighted the main issue: there is no cure for most brain disorders. More and better research is needed to develop treatments and to provide for earlier intervention.

Presentations were given by all leaders of the nine working groups, which covered the patient journeys and economic analysis of Alzheimer’s disease, Multiple Sclerosis, Normal Pressure Hydrocephalus (NPH), Stroke, Headache, Schizophrenia, Parkinson’s disease, Restless Legs Syndrome and Epilepsy. This was done through a panel discussion of all working group leaders, as well as through a 2-hour poster presentation session during lunch, where working groups had the opportunity to present their work to smaller groups of attendees.

The working group’s analyses continued to be presented throughout the day, with the panel discussions moderated by journalist, Peter O’Donnell.
*Further details on individual case studies can be found below, and furthermore, in the white paper.

The second panel discussion brought together various experts to discuss the VoT research conclusions and policy recommendations. Representatives from organisations like the European Commission, European Parliament, Organisation for Economic Co-operation and Development (OECD) and European Observatory on Health Systems and Policies discussed the policy recommendations provided in the White Paper, and views by patient and carer advocates such as The European Federation of Families of People with Mental Illness (EUFAMI) and AGE Platform Europe gave depth to the conclusions found by the two-year study.

Mr. Omar Cutajar, Research Attaché of the Maltese Permanent Representation to the EU in Brussels, closed the conference with a short recap of the collaboration between EBC and the Maltese EU Presidency and the work that has been accomplished. He affirmed further support and called for further collaboration and continued work for brain research in the European Union.

The full day conference came to a close with final words from Prof. David Nutt, who thanked on behalf of EBC, all members and partners for being part of this challenging “journey”, and looks forward to future work together, the continuance of the Value of Treatment project, and for continued work in improving the lives of those living with brain disorders across Europe, and the world.


© Photos by Bart Decobecq



*Epilepsy treatment gaps vary from 10-20 % in developed countries to 75% in low-income countries—well-coordinated and accessible services from first seizure to complex epilepsy surgery can result in reduction of mortality, improve quality of life and is cost saving.

Societal costs of Alzheimer’s disease in Europe are reaching an estimated 190 billion euro, and though brain pathology can now be detected 20 years before the onset of dementia, diagnosis is often made at a later stage of the disease and treatment is symptomatic only.

The large treatment gap of Schizophrenia can be closed by timely, effective and consequent prevention, treatment and management—and early intervention has also shown to improve outcome in a cost-effective way. Investing in research on optimizing interventions, in information systems, awareness building and destigmatization, in training of the mental health workforce, and in better access and delivery of health services are further prerequisites guaranteeing optimal health in severe mental disorders like schizophrenia.

Headache is the 3rd disability leading cause worldwide, and creates societal costs of over 100 billion euro per year. Specialist care is lacking, and the chronic disorder often remains undiagnosed, mistreated or underrecognized as a disorder.

Multiple sclerosis is the leading cause of non-traumatic disability worldwide, and places a societal cost burden of over 15 billion euro per year in the EU. Early treatment and a brain healthier lifestyle slow MS progression and indeed reduce the disease societal and health care costs—for example, lifestyle factors, such as cigarette smoking habit and low vitamin D serum levels, may accelerate disease worsening by 2-fold.

Parkinson’s Disease is the second most common neurodegenerative disorder, with approximately 1.3 million patients across Europe, and costs of €13.4 million per year. Diagnosis is still clinical, and delay of diagnosis averages at about 2.3 years. Furthermore, no preventive or disease-modifying treatments exist, meaning individualized care and access to new treatments can play a major role in the lives of patients. The working group concluded that the amount of disease-specific research funding should be allocated depending on the impact of the disease on the population and the economy of the respective society.

Normal Pressure Hydrocephalus (NPH) is a very common disease in the elderly, manifesting in around 5% of the population over 65. Unlike some of the other disorders covered by VoT, very effective treatment is readily available, but still NPH very often remains undiagnosed and very often untreated. NPH treatment is life-saving, improves the quality of life and is cost effective.

Moderate to severe Restless Legs Syndrome (RLS) affects 2.5% of the European population, and ranks 5th for socioeconomic disease burden of brain disorders in Europe as the costliest neurological disease according to the working groups’ findings. However, there is a still a lack of knowledge in diagnosing and treating RLS, meaning patients often go misdiagnosed and untreated. Policies aiming to increase disease recognition and search for new treatment strategies need to be intensified to reduce substantial societal cost.

Stroke is the leading cause of morbidity/mortality in Europe, but major treatment gaps still exist. 18% of strokes are associated with Atrial Fibrillation, the most common heart rhythm disturbance, yet AF generally remains undertreated. Furthermore, there is a low implementation of specialised stroke units across Europe, which leaves patients misdiagnosed or improperly treated upon onset of stroke. Past this, there is also low access to rehabilitation.

Read all working group findings in the policy white paper and individual working group poster presentations