Suzanne L Dickson is a neurobiologist and Professor of Neuroendocrinology at the University of Gothenburg. She graduated with a Ph.D. in Neuroendocrinology from the University of Cambridge in 1993, where she later became Senior Lecturer in Physiology. She is a leading figure in neuroendocrinology and works within many European Union and international organisations and societies to promote research, facilitate grant funding and training of Early Career Scientists. Her research into the neurobiology of appetite aims to unravel neurobiological pathways that respond to orexigenic signals, such as the hormone, ghrelin, and that drive feeding behaviours, not only food intake but also food choice, food anticipation, food reward and food motivation. This work involves mostly preclinical studies and includes behavioural tasks, viral vector mapping, chemogenetics and RNAscope. She is President of the European Brain Council and Secretary of the European College for Neuropsychopharmacology 

Vinciane Quoidbach is Public Health and Policy Research Project Manager at the European Brain Council, specializing in brain health impact assessments, care and treatment pathway analysis, and evidence-based policymaking. She is currently affiliated with the University of Warwick, United Kingdom, where she is pursuing an MSc in Neuroscience. Prior to her current position, she served as an Advisor to the Belgian Federal Public Service Health and the Federal Minister of Health’s Cabinet, where she was responsible for developing public health policies and regulations in the areas of cancer, chronic diseases, and rare diseases. She also worked as a Technical Officer at the World Health Organization (WHO) in Geneva, Switzerland, within the Non-Communicable Diseases and Mental Health cluster, and at the United Nations Development Programme (UNDP) in Pretoria, South Africa, focusing on health and social development. Vinciane holds a Master’s Degree in Hospital Management from the Solvay Brussels School of Economics and Management and a Postgraduate Diploma in Public Health Management from the Manchester Business School. Additionally, she holds a Master’s Degree in Political Science and European Studies from the University of Antwerp.

Enrique Terol works as Health Counsellor in the Permanent Representation of Spain to the European Union and represents the interests of Spain in the area of health. He is MD, specialized in Family and Community Medicine, MSc and PhD in Public Health and has followed specialisation courses on healthcare management and quality of healthcare.

His professional experience includes the clinical practice, managerial positions as Medical Director and CEO of Primary and Specialised Healthcare in private and public institutions and healthcare planning. He was Deputy General Director of Quality and Health Planning of the Ministry of Health of Spain between 2004 and 2008 in charge of the development inter alia of the Spanish Strategy of ischemic heart disease, Diabetes, Mental health, Rare Diseases and Patient safety.

He worked as Health Attaché in the Spanish Permanent Representation to the EU and coordinator of the area of Health in the Spanish Presidency of the EU between 2008 and 2011. From 2011 to 2020, he worked as Seconded National Expert and as Policy officer in DG SANTE developing the legal and organisational bases for and the set-up and implementation of the European Reference Networks (ERN) for complex and rare diseases under the framework of the Directive of Cross-border Health. Between 2021 and 2022 worked as team leader in the Medical Service of the European Commission.

Since 2022 he works as Health counsellor at Spanish Permanent Representation and coordinated the Health area during the Spanish Presidency of the EU.

Marzena Nelken is Board member of the Polish Association of Patients with Phenylketonuria and Rare Diseases Ars Vivendi. Board member of the Association of Patients with LAL-D disease. Director of the National Forum for the Therapy of Rare Diseases ORPHAN Poland. Expert of the Federation of Polish Patients (FPP) for EU projects. Former board member of the European Patients Forum (until 2022). Member of the Cluster of National Alliances (CNA) at EURORDIS. Expert of the European Institute of Technology (EIT) at the European Parliament. EUPATI fellow – graduated from the European Patients’ Academy of Therapeutic Innovation EUPATI and a representative of the Polish EUPATI Platform, which aims to inform and educate patients about clinical trials. Expert of the Supreme Bioethics Committee for Clinical Research at the Medical Research Agency Poland and a co-author of the educational program for patients experts in Bioethical Committees. Experienced trainer and educator. Eager supporter of “patient involvement” and “patient as a partner approach”. Co-author of information booklets for patients on selected rare diseases. Co-author of the National Forum Orphan’s Audit “The needs of patients with rare diseases in access to medical technologies and optimization of care in Poland”. Involved in the creation of European programs regarding the creation, storage, sharing and protection of sensitive patient data. Member of the Patient Group Committee in the Data Saves Lives initiative, led by EPF and the European Institute for Innovation through Health Data i-HD.

Lutgarde Allard was born in 1959 in Flanders and educated to be a nurse. However, at the time there were but a few jobs and she worked for the government.

Received her diagnosis of Myasthenia Gravis in March 1994 and since 1997 is an active patient advocate. Was a member of the Liga Myasthenia Gravis Vlaanderen form 1994, became a board member in 2010 and was active from the moment her health allowed it, She was a contact person for members to help and support them in the difficult pathway they had to walk. Since May 2023 a board member of the EuMGA, the European Myastnenia Gravis Association and since May 2024, the president of the European Association. Still very active in advocating for the patient community.

Vera Lipkovskaya is a public policy and project officer at NF Patients United, with over 8 years of experience advocating for patients with rare diseases. She also served as Chief Project Design Officer at an AI company, where she led the design and implementation of projects across more than 30 countries for various rare diseases and cancers. Through her work, she advocates for patient-centric approaches in policymaking as well as for greater recognition of the role patient organisations play in shaping the healthcare landscape. A lawyer by training, she also closely monitors legislative developments that address rare diseases and the unmet needs of patients.

Vera is a co-founder of a successful patient organization and a co-author of the European clinical guidelines on neurofibromatosis (NF). Recently, she has also obtained a degree in speech pathology, specialising in patients with neurofibromatosis, to address the unique challenges faced by individuals living with rare conditions.

Prof. Giuseppe Turchetti received his Laurea Degree in Economics from the University of Pisa. He received his PhD in Management from the Scuola Superiore Sant’Anna in Pisa, where he is professor of Economics and Management of Innovation and Healthcare. Fulbright Scholar, he spent several years for research in USA as Visiting Scholar at The Wharton School of the University of Pennsylvania (Philadelphia), at the Illinois Institute of Technology (Chicago) and at the Kellogg School of Management of the Northwestern University (Chicago). He is Co-Founder of the Institute of Management of the Scuola Superiore Sant’Anna (SSSA – Pisa) and of the Center of Excellence ENDOCAS (on Computer Assisted Surgery) of the University of Pisa. His main research interests are in the fields of the: organisation, financing and evaluation of healthcare services and health technologies, of the management of innovation, organization and commercialization of medical technologies (pharma, medical devices, e-health), strategic management and marketing in the healthcare sector. His research addresses many therapeutic areas and the wide field of rare diseases. He is working on/coordinating several national and international projects in the area of healthcare technologies and management. He collaborates in several projects within the ERN Program, European Commission. He is author/editor of twenty books and of three hundred and fifty scholarly papers and book chapters.

I am a vascular neurologist coordinating the Stroke Unit at AUSL-IRCCS of Reggio Emilia (Italy). My main interests in clinical activity and in research are rare neurovascular diseases, both genetic and sporadic one, fibromuscular dysplasia, dissections, small vessel disease and ICH, cerebral amyloid angiopathy, acute stroke treatment, and angiographic techniques. Both in clinical routine and in research I work in a close collaboration with neuroradiologists, building integrated and dedicated pathways for the management of neurovascular diseases. I am directly involved in Italian Stroke Association and European Stroke Organization activities, including the Guidelines Board, Board of Directors and WISE (Women Initiative for Stroke in Europe) working group, of which I am chair.

Prof. Alexis Arzimanoglou is, since 2019, the elected Coordinator of the European Reference Network for Rare and Complex Epilepsies, ERN EpiCARE. Since October 2023, he is also the Director of the Epilepsy Program at the Barcelona Children’s Hospital San Juan de Dios, Universitat de Barcelona, Spain. Born in in Athens, Greece, he received his MD degree from the Aristotle University of Thessaloniki. He trained in neurology and paediatric neurology in London (Great Ormond Street Hospital) and Paris (University Hospitals of Salpêtrière and Necker-Enfants Malades). He developed and chaired (1998-2008) a paediatric epilepsy unit at the Paediatric Neurology Dpt. of the University Hospital Hôpital Robert Debré, in Paris, France. Moved to Lyon, France, in 2008, to develop and serve as Head of the Department of Paediatric Epileptology, Clinical Neurophysiology and Sleep disorders (2008-2023) at the University Hospitals of Lyon. Scientific Societies: Pr. Arzimanoglou served as President of the French League Against Epilepsy chapter (FLAE), as Chair of the Scientific Committee of the European Paediatric Neurology Society (EPNS) and as Associate Editor of its journal and as President of the French speaking Société Européenne de Neurologie Pédiatrique (SENP). He is an active member of several Commissions, Councils and Task Forces of the International League Against Epilepsy (ILAE) and a twice elected member of the ILAE-Europe Executive Committee.
Awards: For his global contribution to epilepsy care he received in 2007 the “ILAE-Epilepsy Ambassador award” and in 2022 the “ILAE-Europe Education award”. In 2017, the EPNS honored him with the “Aicardi award for excellence in Paediatric Neurology”. He is an Honorary member of the Academia Iberoamericana de Neurologia Pédiatrica (AINP).
Ongoing other missions:
• Elected member of the ILAE-Europe Executive Committee.
• Editor-in-Chief Emeritus of the ILAE educational journal Epileptic Disorders.
• Deputy chair of the ILAE Education Council.
Publications: He has authored/co-authored seven books and over 200 peer reviewed scientific publications.

Walter Atzori has been with Alexion, AstraZeneca Rare Disease since 2017 currently serving as Global Patient Advocacy Strategic Lead and Head of EUCAN and International Patient Advocacy. In this capacity he leads strategy and execution of global patient advocacy plans and engagments across the all Alexion therapeutic areas, including pipeline programs. He oversees relationships with key International and / or pan-European rare disease groups ensuirng their meaningful engagement in key initatives across the therapeutic innovation cycle.

Prior to joining the pharmaeutical industry, Walter worked 7 years at the European Patients’ Forum where, among other things, he advocated for the recognition of the value of meaningful patient involvement in medicines’ R&D, contributing to the shaping and implementation of flagship projects and initatives in this area such as EUPATI and PARADIGM.

Sameer Zuberi is Paediatric Neurologist at the Royal Hospital for Children and Honorary Professor, University of Glasgow. His interests include epilepsy, neurogenetics and innovation. He leads the Paediatric Neurosciences Research Group in the University of Glasgow and is clinical lead of the Scottish Genetic Epilepsy service.  He is a Board Member & immediate past President of the European Paediatric Neurology Society (EPNS), Neurodevelopment Clinical Theme Lead for the Epilepsy Research Institute UK and sits on the Board of the European Brain Council. Other roles have included Editor-in-Chief of the European Journal of Paediatric Neurology (2015-21 and Chair of the International League Against Epilepsy (ILAE) Commission on Classification & Terminology (2013-17). He co-designed vCreate Neuro, a smartphone video diagnosis and management web-application. Established in Glasgow in 2020 it is now used by >120 services in the UK and internationally.

Based in Kristiansand, Norway where I live together with my husband. We have two adult daughters.  

My Family is strongly affected by Huntingtons disease (HD). My mother, brother and sister have all passed away with the disease. I have been engaged in patient engagement and advocacy since I was 20 years of age.  First in the Norwegian Huntington association (LHS) for more than 30 years, the last 10 of them as President.  In 2016 I was elected President of the European Huntington Association (EHA) and started to work full time for the organisation as CEO, a position I still hold.   

Since 2023 I have been the President of European Federation of Neurological Associations (EFNA).  Since 2017 I have been  actively engaged as a patient advocate (ePAG) in the European Reference Network for Rare Neurological Diseases (ERN-RND)