OpenLobby.EU
Explore

European Brain Council

EBC

The European Brain Council coordinates European organizations in neurology, neurosurgery, psychiatry, neuroscience, patient groups and industry to partner with EU institutions on brain health policy.

Lobbying Activity

European Brain Council urges faster medical device approval reforms

6 Oct 2025
Topic — The European Commission is revising regulations to simplify medical device and diagnostic rules.
Message — The council requests harmonized evaluation criteria and binding review timelines. They also seek increased capacity at Notified Bodies and better transparency during certification.123
Why — Reform would provide neurosurgical patients faster access to treatments that improve survival.45
Impact — Large non-European companies would lose the market advantage created by high compliance costs.67
Read full response

Response to European Research Area (ERA) Act

10 Sept 2025

The European Brain Council welcomes the Commissions initiative to further structure the European Research Area and strongly supports its ambition to strengthen Europes competitiveness, foster integration and make the EU the most attractive destination for researchers and innovators. For brain research in particular, long-term commensurate and predictable investment is essential. Limited resources as well as segmented funding mechanisms remain a major barrier to progress. The ERA Act should ensure that national commitments to R&D are backed by clear monitoring, accountability and mechanisms that promote stability. Brain disorders neurological and mental alike are widespread, highly disabling and often difficult to treat, representing the leading cause of disability and the second leading cause of death in the world. The brain is the most complex organ of the human body. Understanding how the brain works, how brain diseases progress and finding treatments and cures for these diseases is a long-term endeavour. Brain research is highly interdisciplinary, requiring the use of a wide range of research techniques, based on different models human, artificial, digital and, predominantly, animal which remains essential for progress in this domain. We therefore encourage the inclusion of targeted measures that recognise the unique challenges of brain research, which is inherently interdisciplinary and requires cooperation across science, technology, healthcare and social domains. Reducing administrative burdens will also be critical to accelerate therapeutic innovation and the translation of research into clinical applications, particularly in the life science ecosystem. Harmonisation of regulations and simplification of procedures would strengthen Europes ability to compete globally while supporting researchers on the ground. Moreover, knowledge valorisation should be at the heart of the ERA Act, ensuring that discoveries are effectively translated into innovations and policies that deliver societal benefits. Involving patients and caregivers in this process will help close the innovation gap and ensure that outcomes meet real-world needs. Stronger coordination between the EU and Member States is crucial to ensure that investments and policies are aligned with the strategic priorities laid out in the 10th Framework Programme for Research & Innovation, the Life Sciences Strategy, and other key files for the European research and innovation ecosystem. Brain health and brain capital should be embedded as cross-cutting priorities in research and innovation roadmaps, guaranteeing synergies with health, digital, industrial and social policies. Equally, improving mobility and research careers, promoting open science and ensuring equitable access to infrastructures will be necessary to create the right framework conditions. The ERA Act offers a timely opportunity to build a coherent, resilient and globally competitive European research and innovation ecosystem. By ensuring stable investment and removing barriers to collaboration, the EU can reinforce its position as a global leader in science and innovation while addressing the growing societal and economic challenges posed by brain disorders. The European Brain Council (EBC) is a network of key players in the Brain Area, with a membership encompassing scientific societies, patient organisations, professional societies and industry partners. A non-profit organisation based in Brussels, its main mission is to promote brain research with the ultimate goal of improving the lives of the millions of Europeans living with brain conditions, mental and neurological alike.
Read full response

Meeting with Elena Nevado Del Campo (Member of the European Parliament)

26 Jun 2025 · Challenges of the European research Ecosystems

Meeting with João Cotrim De Figueiredo (Member of the European Parliament)

26 Jun 2025 · Research

Meeting with Adam Jarubas (Member of the European Parliament, Committee chair)

26 Jun 2025 · Zdrowie Mózgu

Meeting with Sebastian Tynkkynen (Member of the European Parliament)

25 Jun 2025 · Neurologian ajankohtaiset asiat

Meeting with Eleonora Meleti (Member of the European Parliament)

25 Jun 2025 · Mental health policies

European Brain Council urges neuroscience priority in Biotech Act

11 Jun 2025
Topic — The consultation seeks views on creating an enabling environment for the European biotechnology sector.
Message — The council demands that brain health be explicitly prioritized to support the translation of research breakthroughs. They advocate for streamlining administrative processes and reducing regulatory burdens from overlapping requirements. They also stress that legislation must protect scientifically justifiable research involving animal models.123
Why — Faster regulatory pathways would allow members to bring innovative neurological treatments to patients more quickly.4
Impact — Animal welfare groups lose ground as the council pushes back against restrictions on biomedical research.5
Read full response

European Brain Council Urges Strategy Centered on Brain Health

17 Apr 2025
Topic — This consultation seeks to develop a multi-disciplinary strategy for revitalizing European life sciences.
Message — The Council calls for brain research to be recognized as a key economic driver and integrated across all EU policy areas. They advocate for cutting administrative red tape and securing stable, long-term funding streams to support innovation.123
Why — Predictable funding and streamlined rules would reduce research disruptions and accelerate the commercialization of neurological treatments.45
Impact — Animal rights advocates may see their influence diminished as the council defends animal research as essential for scientific progress.6
Read full response

Meeting with Aurelijus Veryga (Member of the European Parliament)

18 Mar 2025 · Event: Brain Health Plans Summit

Meeting with Tomislav Sokol (Member of the European Parliament) and Eu for Trisomy 21

5 Feb 2025 · Health policy

Meeting with Margarita De La Pisa Carrión (Member of the European Parliament)

5 Feb 2025 · Spanish Brain Council

Meeting with Estelle Ceulemans (Member of the European Parliament, Committee chair)

16 Oct 2024 · Dossier SANT à venir

Meeting with Tilly Metz (Member of the European Parliament)

15 Oct 2024 · Intergroup on brain health

Meeting with Ruggero Razza (Member of the European Parliament) and MESEURO Srl

9 Oct 2024 · Incontro conoscitivo e scambio di vedute sul mandato del Parlamento europeo

Meeting with Nina Carberry (Member of the European Parliament)

8 Oct 2024 · EU Health Policy

Meeting with Michalis Hadjipantela (Member of the European Parliament)

8 Oct 2024 · Meeting with European Brain Council

Meeting with Nina Carberry (Member of the European Parliament)

26 Sept 2024 · EU Health Policy

Meeting with András Tivadar Kulja (Member of the European Parliament)

10 Sept 2024 · Brain health

Meeting with Miriam Lexmann (Member of the European Parliament)

10 Sept 2024 · Brain health intergroup

Meeting with Miriam Lexmann (Member of the European Parliament)

9 Sept 2024 · Intergroup on brain health

Meeting with Catherine Amalric (Member of the European Parliament) and International Diabetes Federation European Region and

18 Mar 2024 · Renew Europe Workshop on Healthcare in Europe and the patient-centric approach

Meeting with Maria Arena (Member of the European Parliament)

25 May 2023 · Animal testing

Meeting with Sirpa Pietikäinen (Member of the European Parliament)

24 May 2023 · EU Pharmaceutical Legislation

Meeting with Estrella Durá Ferrandis (Member of the European Parliament)

23 May 2023 · Presentación de su investigación relacionada con las enfermedades cerebrales

Meeting with Lina Gálvez (Member of the European Parliament)

23 May 2023 · Research, Neuroscience, Strategic Autonomy and Animal Experimentation

European Brain Council Urges EU Brain Capital Strategy Adoption

14 Feb 2023
Topic — This consultation explores how the EU can improve mental health prevention and care.
Message — The organization requests a strategy prioritizing patient-centered research and multidisciplinary care pathways. They advocate for a 'Mental Health in all Policies' approach and increased funding.12
Why — This shift would secure significant public investment and funding for their research-focused members.3
Impact — Manual laborers may be disadvantaged as the proposed strategy favors a cognitive-based economy.4
Read full response

Meeting with Deirdre Clune (Member of the European Parliament)

24 Jan 2023 · RETHINKING Alzheimer’s disease White Paper

Meeting with Margaritis Schinas (Vice-President) and

8 Apr 2021 · Health Union

Response to European Health Emergency Response Authority

23 Feb 2021

COVID-19 has served as a sharp reality check for public health systems. Developing a European HERA can be the first steps in the vital attempt at building a stronger European Health Union, with improved preparedness to respond to cross-border health threats which can translate into increased preparedness in responding to crucial and urgent health issues beyond the area of infectious disease. In fact, non-communicable diseases – particularly those related to the brain – place an immense burden on society, which continues to grow. In fact, neurological disorders were the cause of 276 million disability-adjusted life years (DALY) & 9 million deaths, with mental disorders adding approximately 8 million deaths annually in 2016. In this light, it would appear that brain conditions must also be addressed as a growing emergency, with none currently curable. The EU and global COVID-19 response must also treat the pandemic as a wake-up call to ensure that public response takes the heavy long-term consequences in mind, as the impact of the coronavirus has been a major and dramatic one, even in areas of chronic disease, such a brain conditions—causing severe mental and neurological consequences. The European Brain Council, a network of key players in the “Brain Area” with a membership encompassing scientific societies, patient organisations, professional societies and industry partners, can propose guidance in a number of areas within the HERA set-up: 1. EBC would propose to provide guidance in the supply of EU overview regarding the medical organization of the member states in the domain of Brain Health; the different EU health emergency systems (e.g. impact of extreme stress on the mental health of a population; impact of infectious diseases on brain health, etc.); the countermeasures available in the different member states (prevention, screening, psychological help, etc.). This can be coordinated through its full member societies (consisting of European scientific, clinical and patient organisations: EAN, EPA, EFNA, GAMIAN-Europe, ECNP, FENS, EPNS, EANS, IBRO) and through National Brain Councils. 2. To fight EU fragmentation in Research and in Health care principles, coordination must be streamlined between the individual country programmes (i.e., brain plans in Germany, France, etc.) and coordination for global research programs and global health plans (which are currently different in between countries) needs to be aligned. Since research programs are often based on a Public Private partnership and since private companies are more often “transborder” or “cross border”, this cross-border approach can be a good opportunity to facilitate the harmonization of research programmes and of global health plans as well. Regarding the harmonization of research program, the dissemination of the results of the European Brain Research Area project will be crucial to guide this process. For the second aspect of fragmentation, the EU is hopefully expected to bring to member states new knowledge concerning what are the best validated health care principles. In this regard, the studies within the EBC Value of Treatment project can significantly help the EU and the HERA set up. 3. Risk assessment for a huge sample of brain diseases does not exist at EU level (risk factors are well known for brain diseases –mental and neurological alike – but are not correctly assessed or re-assessed at the level of each country and the adequate prevention measures to be drawn of them are not implemented). EBC can significantly help to collect standardized data focused on this type of assessment through the surveys already completed, or poised to be completed in term of risk assessment by its full member organizations. In these domains, EBC – and its constituency – is in good position to disseminate recommendations and to collect feedback from across Member States regarding the different implemented measures.
Read full response

Meeting with Ines Prainsack (Cabinet of Commissioner Stella Kyriakides), Panayiotis Pourgourides (Cabinet of Commissioner Stella Kyriakides) and

18 Nov 2020 · Exchange of views with EFNA, EAN and EBC on EU4Health, the impact of COVID-19 on mental and neurological health and their participation and contribution in the Health Policy Platform and other fora.

Meeting with Jean-Eric Paquet (Director-General Research and Innovation)

13 Oct 2020 · Brain Innovation Days - Keynote speech: current state of affairs on Horizon Europe

Response to Europe’s Beating Cancer Plan

3 Mar 2020

Cancer-related complications and comorbidities are a highly significant burden on patients across Europe that is all too often neglected in policy and research. The European Brain Council, as part of the Cancer Related Complications and Comorbidities Initiative (which brings together relevant stakeholders at the EU level), defines a comorbidity as the co-existence of disorders in addition to a primary disease (cancer) and a cancer complication as a complication resulting from the underlying malignancy or its treatment. Depression affects 15-25 % of cancer patients, and cancer often affects the nervous system & can result in significant neurological morbidity and mortality. Around 15-20 % of cancer patients have neurological complications. Furthermore, cancer associated thrombosis alone is the second leading cause of death in cancer patients. One in five of all cancer patients develop VTE (venous thromboembolism) and their 1 year survival is reduced to one-third of that of other cancer patients. People living with obesity have an increased risk of developing several types of cancer and the percentage of new cancer cases attributable to overweight and obesity is higher in Europe than the global average. We seek to shed light on this significant burden and call on the EU to make cancer-related complications and comorbidities a central part of the cancer plan as comorbidities can only be dealt with through a multidisciplinary and holistic approach that ensures better and integrated care for cancer patients. 1. We would like the plan to prioritise patient safety and appropriate early detection and prevention in order to reduce overall mortality and disability among cancer patients. As cancer treatments improve, many cancer patients do not have just one disease or one outcome anymore, therefore measures to reduce the rates of all preventable complications in cancer patients must be emphasized in order to reduce mortality and increase patients’ quality of life. 2. Ensure that the management of cancer patients with comorbidities is defined by integrated care, that is the care is shared between relevant specialists, involves informal carers as long as they wish to and are supported, includes psychosocial support, careful use of complementary medicines, and systems that are in place for data collection and sharing. Facilitate coordination between Member States in order for them to establish Comprehensive Cancer Care Networks (CCCNs) which is the optimal way of offering multidisciplinary and integrated cancer care according to the CanCon Guide recommendations. CCCNs should as a minimum digitally interconnect and integrate precursor and co-morbid conditions and diseases such as obesity. 3. Provide guidance to Member States to ensure both healthcare professionals (HCP) and informal carers can bridge knowledge gaps by being trained to identify and manage comorbid conditions. Properly trained HCPs, such as nurses, play a key role in prevention by educating patients and their families on healthy living and disease management if they receive the proper support. Informed citizens as a consequence make better choices, are more likely to seek timely and appropriate medical attention and can better manage their condition, leading to improved health outcomes in the long term as well as decreased health expenditure. 4. Address the privacy concerns with cross-border data sharing by ensuring that the European Health Data Space is the preferred place for sharing data, in compliance with GDPR and forthcoming guidelines. 5. Dedicate funding to research on comorbidities to fill existing gaps in research and better understand disease interactions within EU’s Horizon Europe (2021-2027) research programme. 6. Commission a survey by Eurostat on Survivorship in order to better understand the follow-up needs of those affected by cancer (e.g. personalised follow-up, late effect management and tertiary prevention).
Read full response

Meeting with Didier Reynders (Commissioner)

9 Jan 2020 · Brain sciences

Meeting with Mariya Gabriel (Commissioner)

10 Dec 2019 · Research

Response to European Partnership for innovative health

5 Aug 2019

It is our conviction that a robust European Partnership on Innovative Health is a key requisite for accelerating the development of novel treatments, alleviate the burden of a large number of non-communicable diseases, improve patient diagnosis and care as well as improve health outcomes for Europeans as a whole. As highlighted in the Inception Impact Assessment, brain disorders are a major group of disorders proving a heavy burden on European society but lacking recognition and investment as a public health unmet need. These diseases are highly disabling conditions that are widespread across Europe. In 2010, it was estimated that close to 179 million European citizens were affected by mental or neurological disorders. More recent studies have demonstrated that neurological disorders caused 276 million Disability-Adjusted Life Year (DALYs) and 9 million deaths in 2016 whilst mental illness resulted in 8 million deaths annually. As yet, however, there is no disease modifying treatment available to cure a wide range of mental and neurological conditions. Despite the achievements of brain researchers during recent decades, the understanding of the brain’s function and the pathophysiology of most brain disorders remains limited. It also remains extremely challenging to develop effective treatments that can significantly improve the lives of people affected by brain disorders. Timelines for developing medicines and devices required to treat Central Nervous System (CNS) conditions alone can take up to 18 years (compared to the average 12 years for other drug pipelines) and new drugs face low approval rates. The pace of innovation in the domain of CNS disorders is continuously hindered by the complexity of brain diseases, increased drug development costs and the high risk of failure throughout the pipeline. A European Partnership on Innovative Health, if properly designed, has the potential to address these challenges and enable an environment to foster investment and policy engagement in innovation in brain disorders and health as a whole, to the benefit of patients and European society at large. In order to achieve these aims, the anticipated partnership should set specific and ambitious targets, aimed at further identifying issues that hinder the development of novel treatments and removing existing barriers to research, with the ultimate goal of improving the pace of innovation for people living with diseases that are not well understood and under-treated, such as brain disorders. The forthcoming partnership should also be the basis of concrete actions for stimulating investment in health research, whilst enabling synergies with other funding streams of the Horizon Europe programme. Multi-stakeholder collaboration is key to fostering innovation in health research. As such, the partnership on Innovative Health should enable all actors that have a stake in research, including regulators, payers, patient groups, industries and innovation bodies, to streamline and better coordinate research efforts across Europe. The partnership should particularly focus on linking stakeholders with decision-makers at the EU and national levels as such connections are essential for finding collaborative solutions to the challenges connected to therapeutic innovation. The partnership on Innovative Health holds the promise of becoming a robust tool for accelerating innovation and reducing the disease burden in healthcare, particularly in the domain of brain disorders. We therefore hope that the above recommendations will be taken into consideration as these will not only address the societal impact of brain disorders but also contribute to achieving the Sustainable Development Goals as well as the health-related ambitions of the EU.
Read full response

Meeting with Alfredo Sousa De Jesus (Cabinet of Commissioner Carlos Moedas), Giulia Del Brenna (Cabinet of Commissioner Carlos Moedas)

18 Jan 2018 · FP9

Meeting with Xavier Prats Monné (Director-General Health and Food Safety)

1 Feb 2017 · Discussion on prevention and sustainability of the healthcare systems.

Meeting with Xavier Prats Monné (Director-General Health and Food Safety)

28 Jan 2016 · Discussion on the costs of the brain disorders

Meeting with Kilian Gross (Digital Economy)

25 Jan 2016 · discussion of EU-wide plan addressing brain health

Meeting with Kilian Gross (Digital Economy)

25 Jan 2016 · understanding the human brain

Meeting with Carlos Moedas (Commissioner)

18 Jun 2015 · European Brain Research

Meeting with Paula Duarte Gaspar (Cabinet of Commissioner Vytenis Andriukaitis)

26 May 2015 · Action by EBC and by EU on brain health and mental health in general, possibilities for co-operation