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

Elena Moro is Professor of Neurology at Université Grenoble Alpes and at the Department of Psychiatry, Neurology and Neurological Rehabilitation of CHU Grenoble in France. She graduated in medicine at the University of Trieste, Italy, and completed her residency in neurology at the Rome Catholic University. She then went on to complete a fellowship in movement disorders in Grenoble, France. After receiving her PhD in neurosciences, she joined the Division of Neurology at Toronto Western Hospital, Canada, as medical director of the surgical programme for movement disorders. In 2012, she moved to Grenoble, France, where she is currently director of the Movement Disorders Center and head of the Department of Psychiatry, Neurology, Neurological Rehabilitation and Forensic Medicine.

Her main research is focused on restoring brain function, especially with deep brain stimulation. To date, she has published more than 200 papers based on clinical research in movements disorders. Prof. Moro has trained many medical students, PhD students and neurology fellows. She has previously served on the EAN Board as Treasurer (2018-20) and Secretary General (2020-22).

Psychology graduate, Sarah Moon Howe worked for nearly 10 years with adults with disabilities and mental retardation. Alongside her job, she leads a filmmaking career. In 2003, she made based on its archives “Do not tell my mother,” a documentary unveiled at the 60th Venice Mostra. The trip movie, takes part in many festivals around the world. The birth of her son, Jack, and the announcement of his difficulties will bring it again to record his daily life. From this experience is born “If depressurization” in 2009. “The kangaroo complex” is her third film. Alongside her film activities, Sarah explores with sound documentary “Living with Medusa” in 2011 and “Channel Strip” in 2013. With these documentaries, Sarah Moon Howe lays the foundations for a significant work, the borders of the intimate, transcending her experience to capture images into sounds.

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.

Alexandra Heumber Perry is the Chief Executive Officer of Rare Diseases International, the global alliance of Persons Living with a Rare Disease. She has dedicated her entire career to contribute improving healthcare policies to benefit people living with diseases, with a particular focus in neglected and vulnerable people. She has over 20 years’ experience in global health with demonstrated capabilities in patient advocacy and multi-stakeholder partnership. As CEO of RDI, Alexandra sets the strategic direction, drives the organization’s goals of raising awareness of rare diseases, improving access to diagnostics, treatments and care, advocating for the rights of patients around the world and representing its members and enhancing their capacities to ultimately improve lives of Persons Living with a Rare Disease.

ABOUT RARE DISEASES INTERNATIONAL
Rare Diseases International (RDI) is the global alliance of People Living with a Rare Disease (PLWRD) of all nationalities across all rare diseases. Representing over 100 organizations on 6 continents, RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent and empower its members. RDI’s main goal is to address PLWRD’ inequities and to shape international policy on rare diseases, strengthening health systems to address rare diseases, and advancing Universal Health Coverage. RDI was successful in having rare diseases identified in the 2019 UN Declaration on Universal Health Coverage and again in the 2023 renewal. In 2021, RDI successfully advocated for the adoption of a United Nations General Assembly (UNGA) Resolution on Rare Diseases. In 2024, RDI became a Non-State Actor in official relations with the WHO.

Valentina Bottarelli joined EURORDIS in 2007 as European Public Affairs Senior Advisor.

Valentina provides policy analysis and strategic advice on EU policies as well as funding opportunities from EU public institutions.

She is also in charge of coordinating, on behalf of EURORDIS, activities aimed at fostering the development of National Plans on Rare Diseases in EU countries within the framework of the EUROPLAN project.

Valentina has extensive experience in the area of EU policies and programmes as well as managing European-funded projects, she has worked as a consultant in public affairs and communications. She has also worked at the European Commission, Directorate External Affairs. Valentina holds a Master of Arts in European Political and Administrative Studies from the College of Europe in Bruges. An Italian national, she speaks Italian, French, English and Spanish.

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.

Dr. Lorenzo Maggi has a well-known expertise in neuromuscular disorders and he is the referral consultant neurologist for muscle diseases at Fondazione IRCCS Istituto Neurologico Carlo Besta, leading a clinical and laboratory team contributing to clinical, diagnostic and research activities, including pharmacological clinical trials.

He is the Coordinator of the Italian Network of the Congenital Myasthenic Syndromes together with Prof. Rodolico (Messina, Italy), the Coordinator of the Italian Network of Myofibrillar Myopathies and Distal Myopathies together with Dr. Tasca (Rome, Italy) and the Coordinator of the Italian Network on adult SMA together with Prof. Pegoraro (Padua, Italy) and Prof. Comi (Milan, Italy). He is member of the coordination board of the Italian Network of Laminopathies. He is also member of the Muscle Working Group of the European Reference Network on Neuromuscular Diseases, member of the Guidelines Core Group of the European Reference Network on Neuromuscular Diseases, and member of the Scientific Panel on Muscle and NMJ disorders of the European Academy of Neurology. He is member of the board of the Italian Association of Myology (2022-to date).

He is the co-cordinator of the Working Group on Neuromuscular Junction in the context of European Reference Network on Neuromuscular Diseases, together with Prof. Hanns Lochmüller (Friburgo, Germany; Ottawa, Canada), since December 2023. He is member of the Editorial Board of Neuromuscular Disorders (2023-to date).

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 engagements across the all Alexion therapeutic areas, including pipeline programs. He oversees relationships with key International and / or pan-European rare disease groups ensuring their meaningful engagement in key initiatives across the therapeutic innovation cycle.

Prior to joining the pharmaceutical 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 initiatives in this area such as EUPATI and PARADIGM.

Anna Kole is a public health professional with over 20 years of international experience in health education, communication, fundraising, advocacy and policy making for people living with rare disease and other vulnerable populations.

She recently joined UCB pharma in 2022 as Global Patient Engagement Lead for Myasthenia Gravis – meaningful engaging patients and patient associations in the drug development process and driving collaboration with patients and all stakeholders in “Rethinking MG”.

Prior to joining UCB she helped grow EURORDIS over 15 years in a number of positions. Most recently as Public Health Policy Director, she led the Rare 2030 Foresight Study to propose recommendations for the future of rare diseases policies in Europe. Previous positions included representing EURORDIS in research consortia (e.g. IRDIRC, RD Connect, TREAT NMD) and a range of policy and patient engagement activities at Orphanet and NORD in the US. In her free time, Anna runs charity sales for patient organizations.

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.

Julian Grosskreutz is a clinician scientist with a strong interest in translational neuroscience to develop new therapies in neurodegenerative diseases. Starting at the LMU and TU Munich (D) with basic research on human peripheral nerve excitability, he expanded his work in Sydney (AU), Graz (A), Hannover (D), Leuven (B) and Sheffield (UK), conceptualising a disturbance of the ER mitochondria calcium cycle as key mechanism in neurodegenerative diseases.

Since 2007, he is an independent researcher, has run a large translational clinic for patients with neuromuscular and motoneuron diseases in Thuringia 2007-2021.

In August 2021 he has taken on the position of Chair of Precision Neurology, Neuromuscular and Motoneuron Diseases at the University of Lübeck, Germany. He coordinates the global MRI repository of the Neuroimaging Society in ALS and cooperates on a national, European and global level with motoneuron disease researchers and clinicians to model disease progression and biomarker/neuroimaging driven stratification to facilitate clinical trial development.

Since Sept. 2023. he is chair of the EU ALS coalition which brings together stakeholders in the ALS field to advise policy makers on decisions improving health care for people living with ALS.

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.

I come from a family affected by Huntingtons Disease (HD). My mother developed the disease throughout my adolescence and her disease had huge impact on the entire family. My brother passed away with HD 10 years ago and my sister died last year after suffering from various and steadily growing symptoms for more than 20 years. I have been engaged as a patient advocate and within the association for over 40 years. In 2010 I tested negative for the Huntington gene and learned that I was not at-risk to develop HD. The same year I joined the board of the European Huntington Association and since 2016 I have been the president and CEO. This position enables me to work full time for the community. I am also very much involved in advocacy and the neurology patient community through my position in the board of the European Federation of Neurological Associations (EFNA) since 2019 and have served as President since 2023. When the European Reference Networks was set up as an EU initiative in 2027, I joined as patient advocate in the network for Rare Neurological Diseases (ERN-RND). A position I still hold and appreciate as the ERN`s are a crucial infrastructure of clinics and expertise in the RD space.

I am educated as a teacher for people with learning difficulties and disabilities. I have additional university degrees in developmental psychology, communication, social skills, management and innovative processes.

I live in Kristiansand, a town in the southern part of Norway together with my husband.

Kailash Bhatia is a Professor of Clinical Neurology at the Department of Clinical and Movement Neuroscience of the Institute of Neurology, UCL, Queen Square, London.

Prof. Bhatia has been an active member of the International Parkinson and Movement Disorder Society (MDS) over the past 22 years and has served on various committees. He was privileged to receive honorary membership of the MDS in 2021 and was also honored to be invited to deliver the Stanley Fahn Oration in 2022 at the MDS congress in Madrid. He is the current co-chair of the EAN Coordinating Panel on Rare Diseases and served as the special EAN liaison for the EAN/IAN (Indian Academy of Neurology) collaboration in 2021-22. He has accepted and trained a number of fellows from various countries under the EAN’s fellowship programmes, has taken part in numerous EAN schools and workshops, and contributed to the EAN online web forums.