Rethinking Alzheimer’s Disease Pathway: From Diagnosis to Care
Event at the European Parliament | 3 December 2024 | 10:30-13:00
Following the release of the Rethinking Alzheimer’s Disease Perspective Paper “Rethinking Alzheimer’s Disease Pathway: From Diagnosis to Care” on the occasion of the World Alzheimer’s Month in September 2024, the aim of the invitation-only event, set to take place on 3 December 2024 at 10:30-13:00 in the European Parliament (room SPINELLI 8F388) in Brussels, is to bring together key stakeholders in the field to rethink how we approach Alzheimer’s treatment, care and management and shape the future of brain health in Europe. The event will be hosted by MEP Tsvetelina Penkova (S&D, Bulgaria) and is organised by the European Brain Council (EBC) in collaboration with the European Federation of Pharmaceutical Industries and Associations (EFPIA).
The aim of the Rethinking Alzheimer’s Disease Perspective Paper is not merely to document the status quo, but to challenge it—to rethink how we approach Alzheimer’s treatment, care and management. By offering a comprehensive review of current practices, identifying challenges, gaps and barriers, and proposing policy recommendations, this report seeks to reshape the Alzheimer’s disease healthcare pathway in ways that enhance outcomes and quality of life for all involved, and reduce the impact on society.
Discover the early programme!
MEP Tsvetelina PENKOVA
Tsvetelina PENKOVA is a Member of the European Parliament from the Group of Socialists and Democrats. She is a Vice-Chair of the Industry, Energy and Research (ITRE), member of Regional Development (REGI), Internal Market (IMCO) and Monetary Affair (ECON) Committees. Tsvetelina Penkova is a vice-chair of the group for support of nuclear energy in the European Parliament. She is the President of the European Energy Forum. She was previously a finance specialist at an investment fund in London, an investment banker at the Royal Bank of Scotland and an analyst at Egon Zehnder. Prior to this, she was a Consultant at ING and a financial analyst at Astra Zeneca. She holds a Master’s degree in Financial Economics from Oxford University, double Bachelor’s degree at Bocconi University in Milan and the Central European University in Budapest.
Helen Rochford-Brennan
Vice Chair, Irish Dementia Working Group
Helen Rochford-Brennan is a Global Dementia Ambassador, former Chair, and currently Vice Chair, of the Irish Dementia Working Group; and currently a member, (formerly Chairperson), of the European Working Group of People with Dementia and its nominee to the Board of Alzheimer Europe. Helen sits on the Monitoring Committee of Ireland’s first National Dementia Strategy and is a panel member of multiple advisory groups in Ireland and Europe.
Frédéric Destrebecq
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.
Fred holds a master’s 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. Prior to EBC, Fred served the European Union of Medical Specialists (UEMS) as Chief Executive Officer, and previously as Director for European Affairs.
Helen Rochford-Brennan
Vice Chair, Irish Dementia Working Group
Helen Rochford-Brennan is a Global Dementia Ambassador, former Chair, and currently Vice Chair, of the Irish Dementia Working Group; and currently a member, (formerly Chairperson), of the European Working Group of People with Dementia and its nominee to the Board of Alzheimer Europe. Helen sits on the Monitoring Committee of Ireland’s first National Dementia Strategy and is a panel member of multiple advisory groups in Ireland and Europe.
Hassan Fadli
Founder of 5 Ironmans Beat Alzheimer’s Initiative
After graduating as a materials engineer from the University of Paris, Hassan began his career in a research laboratory before embarking on an international expatriation journey spanning more than 15 years.Throughout his career, Hassan worked in France, the UK, the US, Switzerland, Taiwan, Spain, and China, developing advanced solar energy technologies while immersing himself in the rich and diverse local cultures. Returning to Switzerland in 2013 as Director of Research and Development, he also found time to rekindle his passion for triathlon.
In 2021, after Hassan’s father was diagnosed with Alzheimer’s disease, his father encouraged him to take action for the Alzheimer’s cause and community. Inspired by this heartfelt request, Hassan launched the “5 Ironmans Beat Alzheimer’s” initiative the very next day. The non-profit association aims to raise awareness with a documentary movie featuring 100+ individuals. Promote early prevention programs engaging youth in schools and science to study to he benefits of endurance sports for brain health.
Ron Handels
Assistant Professor, Alzheimer Centre Limburg Maastricht UniversitY
I work as an assistant professor at the Alzheimer Centre Limburg at Maastricht University and am affiliated to the Karolinska Institutet. I’m part of the International Pharmaco-Economic collaboration on Alzheimer’s Disease (www.ipecad.org). My background is in epidemiology and cost-effectiveness analysis in Alzheimer’s disease (AD). I perform research in the area of (early) cost effectiveness of diagnosis and treatment of AD, and natural AD disease progression. My work has been funded by national and international funding schemes (among which ZonMw, H2020, JPND and IMI). On an occasional basis I provide advisory for pharmaceutical organizations.
Argonde van Harten
Medical Specialist in Neurodegeneration, Amsterdam UMC
Argonde van Harten is a neurologist and senior researcher at the Alzheimer Center Amsterdam, Amterdam UMC, the Netherlands. She divides her time between clinical care for patients with cognitive concerns and her research on improving the diagnostic pathway for patients with Alzheimer`s disease and other neurodegenerative diseases. As part of multiple (inter)national collaborations her research mainly focusses on implementation of blood based biomarkers in clinical care.
Laura Campo
Executive Director International Corporate Affairs, Alzheimer’s disease, Eli Lilly and Company
Laura Campo is responsible for the out-of-US relationships with Patient Associations and Health Professionals in the Global Corporate Affairs division at Eli Lilly and Company. In her role, Laura coordinates Lilly’s efforts to engage the external environment in Alzheimer’s disease, Migraine and Pain. Before joining the International Corporate Affairs role, Laura served as Corporate Affairs Market Access Manager at Eli Lilly Italia, supporting the Regional access plans in the Oncology, Cardiovascular, CNS, and other therapeutic areas, with a special focus on the partnership programs with Regional Institutions on the optimization of NHS processes. During the years in the Italian Corporate Affairs Division, Laura also covered the role of Country Leader for two major Lilly efforts in the environment engagement space, raising the attention to public policy issues that limit the access to patient’s care in the Oncology area and in the Alzheimer’s disease area. In the previous years within Eli Lilly and Company, Laura covered other National and International roles as Marketing Manager in the Attention Deficit & Hyperactivity Disorder area in Lilly Italia, European Regulatory Affairs Manager in the UK and Research Scientist in the Lilly Research Laboratories (Indianapolis). Laura pursued a post-doctoral fellowship at the University of Alabama at Birmingham and her graduate school in Italy where she currently lives.
MEP Tomislav Sokol
Group of the European People’s Party (Christian Democrats)
Tomislav Sokol was born in Zagreb in 1982. He obtained his first degree in law at the Faculty of Law, University of Zagreb, in 2006, magna cum laude. He then obtained a Masters of Law (LL.M.) specialising in European Union Law at the Katholieke Universiteit Leuven (KUL), Belgium, in 2009, magna cum laude. He defended his PhD at KUL, dealing with free movement of cross-border health care services in the EU and its impact on national health insurance systems in 2014.
He was an Assistant Minister in the Ministry of Science and Education in 2017, after which he became a Member of the Croatian Parliament. He was a Member of the Croatian Parliament until July 2019, when he became a Member of the European Parliament. He is EPP Coordinator in Committee on Public Health (SANT), Member of the Committee on the Internal Market and Consumer Protection (IMCO), Substitute Member of the Committee on the Environment, Public Health and Food Safety (ENVI) and Committee on Constitutional Affairs (AFCO) in the European Parliament. Mr. Sokol is main Rapporteur for the European Health Data Space and EPP Shadow Rapporteur for Pharmaceutical legislation (Regulation).
So far, he has published around 20 papers and 1 book on issues concerning EU law, including several articles in European journals, such as the European Law Review and the European Law Journal. He has presented papers at many international conferences and worked on different research projects. Currently, he is a Senior Lecturer at the Zagreb School of Economics and Management where he has taught Introduction to European Union and Principles of Law courses since the academic year 2010/2011. He is also an assistant professor at the Catholic University of Croatia where he has taught since the academic year 2016/2017. His areas of professional interest include the law of the European common market, EU health law, competition law, International and European social law and International and European trade law.
MEP Tomáš Zdechovský
Group of the European People’s Party (Christian Democrats)
Tomáš Zdechovský is a Member of the European Parliament representing the Czech Republic (KDU-ČSL) since 2014. Dedicated to public health and social well-being, Zdechovský has consistently championed policies aimed at improving mental health and brain health across Europe. As a member of the Committee on Civil Liberties, Justice and Home Affairs (LIBE) and a former crisis manager, he has a deep understanding of the social and economic challenges posed by neurodegenerative diseases like Alzheimer’s.
Zdechovský is committed to fostering European-level cooperation on research, prevention, and treatment of brain disorders. He advocates for sustainable healthcare funding and innovative public-private partnerships to enhance early diagnosis and improve access to care. By integrating mental health into broader public health strategies, he seeks to address the growing burden of brain health on national and global health systems.
His engagement with patient advocacy groups and support for increased awareness campaigns underlines his belief in mental and brain health as a fundamental pillar of European public health policy. Recognized for his evidence-based approach to policymaking, Zdechovský continues to push for initiatives that prioritize brain health as an essential aspect of achieving long-term societal resilience and well-being.
Prof. Dr. Sebastiaan Engelborghs
Full professor of neurology and neurosciences at Vrije Universiteit Brussel
Sebastiaan Engelborghs is full professor of neurology and neurosciences at Vrije Universiteit Brussel (VUB), chair of research group NEUR (Neuroprotection & Neuromodulation), co-director of the VUB Center for Neurosciences (C4N) and chairman of the neurology department of the VUB university hospital (UZ Brussel). He is co-founder and co-director of the transdisciplinary memory clinic in UZ Brussel, Brussels Integrated Center for Brain and Memory (Bru-BRAIN). He as well is full professor of neurosciences and neurochemistry at University of Antwerp.
Sebastiaan Engelborghs is board certified in clinical neurology (2001) and neurological revalidation medicine (2009). He achieved a PhD in medical sciences in 2004 and has interdisciplinary expertise in clinical neurology and neurosciences, including electrophysiology, neuroimaging, biochemistry, neurogenetics and neuropathology. Both clinically and with regard to research, he is specialized in neurodegenerative brain disorders that cause dementia. He has built up expertise in clinical trials for AD and related disorders for more than 25 years and was PI as well as national or global coordinating physician for several clinical trials, as well as being involved in the design of some of these clinical trials. Sebastiaan Engelborghs serves as co-chair of the European Alzheimer Disease Consortium (EADC), as co-chair of the dementia and cognitive disorders scientific panel (SP) of European Academy of Neurology (EAN) and is vice-president of the Belgian Dementia Council (BeDeCo). He is co-inventor of one patent and is academic promoter of two spin-off companies, Epilog and ADx Neurosciences.
He is (co-)author on 432 PubMed-cited papers in international peer-reviewed journals and 19 book chapters which results in 35.228 citations without self-citations, and a h-index of 82.
Kristiya Ivanova
Volunteer Expert, Alzheimer Bulgaria civic association
Kristiya Ivanova is volunteer expert at the Alzheimer Bulgaria civic association and at the currently coordinates a campaign of the social enterprise of the association – TheSocial Store. The initiative is aimed at providing timely support for people with dementia, their families and carers through expanding access to specialist resources such as 3D printed materials adapted into games that stimulate cognitive and social activity. Kristiya is a actively working on the project “Non-medical therapies for maintaining cognitive abilities of people affected by dementia” of the Alzheimer’s Society Bulgaria”, which is being run at Blocks Health and Social Care. It runs various therapies such as music therapy, art therapy, Story2Remember and cognitive games in order to support and maintain cognitive abilities and emotional wellbeing of people suffering from dementia.
Katerina Valkova
Associate Director, European Public Policy, Bristol Myers Squibb
Katerina Valkova spearheads Bristol Myers Squibb’s initiatives to engage external stakeholders in the Alzheimer’s disease and mental health sectors at the European level. She also oversees BMS’s external engagements related to the revision of the General Pharmaceutical Legislation, with an emphasis on future-proofing the European regulatory network.
Before joining BMS, Katerina served as Head of Office to a Member of the European Parliament for five years. Her previous roles include positions at the European Commission, UNDP, and a news website in Bulgaria.
Katerina holds a Master’s degree in Health Economics and Pharmaeconomics from Pompeu Fabra University in Barcelona, Spain, an MSc in Security Studies from University College London, UK, and a Joint Honours BA in International Relations and Russian Language from the University of Leeds, UK.
Frédéric Destrebecq
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.
Fred holds a master’s 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. Prior to EBC, Fred served the European Union of Medical Specialists (UEMS) as Chief Executive Officer, and previously as Director for European Affairs.
Please note that this is a provisional programme which may still be subject to change.
Rethinking Alzheimer’s Disease Pathway: From Diagnosis to Care
We are at a historical crossroads in the management of Alzheimer’s disease, with new treatments becoming available in various countries. For the first time in history, science is delivering new, potentially disease-modifying treatments for devastating diseases such as Alzheimer’s disease. Yet, the current healthcare system and regulatory and policy frameworks do not easily allow the implementation of such innovations, even for the subset of people living with Alzheimer’s who would be eligible.
Now is the time to make sure that the post-diagnostic care pathway is optimised to the person needs and that the healthcare systems in each country are properly harnessed and informed to provide the most appropriate treatments to the right patient at the right time.
For this reason, we call on policymakers to drive regional, national, EU, and international policies that can help to improve the lives of people living with the disease, define a post diagnostic pathway through sufficient guidelines and funds allocated for optimal implementation, which will also improve alignment and harmonisation of the pathways across the countries. We need to ensure that health systems are better prepared to support the post-diagnostic pathway now, and when innovative tools and therapies become available.
Practical Details
Host: MEP Tsvetelina Penkova (S&D, Bulgaria)
Date: 3 December 2024
Time: 10:30-13:00 (Brussels time)
Room in the European Parliament: SPINELLI 8F388 (BRU)