Conference speakers

Jarosław Kulczycki:

Chief Public Relations Officer at Medical University of Warsaw.

A journalist with almost 30 years of experience, a specialist in Public and Media Relations, a linguist and translator of English by education.

A graduate of Applied Linguistics at the University of Warsaw and postgraduate studies in social psychology at SWPS. He studied journalism at the Warsaw Journalism Center and the TVP Academy.

A television presenter and host of news programs, author of reports and interviews. As a journalist for TVP2, he produced public affairs programs related to the process of Poland's accession to NATO and the European Union. Later, he hosted the following news programs: Panorama TVP2, Wiadomości TVP1, Panorama Dnia TVP Info, 24 Godziny NOWA TV. In 2023-24, he headed the editorial office of Panorama TVP.

Academic lecturer. He conducted lectures and workshops on journalism, TV journalist workshop and Public Relations at SWPS University and the Leon Kozminski Academy. Experienced trainer - trained in communication strategies, public speaking, working with a camera, TV interview and crisis management of corporate image. In 2022-23 Spokesperson of the Medical University of Warsaw.

Prof. Dr. hab. n. med. Rafał Krenke – Rector of the Medical University of Warsaw, previously held the position of Vice-Dean and Dean of the Faculty of Medicine of the University. Head of the Department and Clinic of Internal Medicine, Pulmonology and Allergy at the Central Clinical Hospital of the University Clinical Center. As a scientist, he has completed many research projects, including grants from the National Science Center and the National Center for Research and Development, and as an academic teacher, he has been educating students and doctors for more than 25 years. Initiator of the lung transplantation project at the Medical University of Warsaw, he created a modern Center for Interventional Pulmonology. Member of many national and foreign scientific societies, including Polish Society of Internal Medicine, Polish Respiratory Society and European Respiratory Society.

As Minister of Health, Izabela Leszczyna takes part in shaping national health policy and is responsible for both its content and implementation. She leads the government administration in the area of health and carries out tasks assigned by the Prime Minister.
From 2013 to 2015, Izabela Leszczyna served as Secretary of State at the Ministry of Finance, where she oversaw the departments of social insurance, financial market development, legal affairs, security and information protection, as well as the Financial Education Office.
Izabela Leszczyna is a Member of the Polish Parliament (Sejm) in its 6th, 7th, 8th, 9th, and 10th terms. From 2015 to 2023, she was Deputy Chair of the Public Finance Committee.
 

Baiba Miltoviča has been appointed in 2020 President of the “Transport, Energy, Infrastructure and Information Society” Section (TEN) of the European Economic and Social Committee (EESC). At the same time, Ms Miltoviča serves as Board Member of the Latvian National Association for Consumer Protection (LPIAA) and actively co-operates with the European Consumer Organization (BEUC) on the European Commission Horizon 2020 and DG Justice and Consumers projects. She is member of the European Consumer Consultative Group (ECCG) of the European Commission, subgroup on Energy and Sub-Group on Artificial Intelligence (AI), connected products and other new challenges in product safety.

In her previous mandate at the EESC, Ms Miltoviča held a position as Vice-President of the Diversity Europe Group of the European Economic and Social Committee and was an active member of TEN, appointed Rapporteur of 6 opinions (on energy and climate policy, energy performance of buildings, internal gas market, heating and cooling, etc.) and of the Single Market, Production and Consumption Section (INT) and Economic and Monetary Union and Economic and Social Cohesion Section (ECO) of the EESC.

At the national level Baiba Miltoviča continues to fulfil responsibilities in the LPIAA and is Member of the Advisory Board of the Latvian Public Utilities Commission.

Ms Miltoviča holds a degree in political science and lectures at Latvia University of Life Sciences and Technologies, Faculty of Economics and Social Development.

Olivér Várhelyi

2024-present 
European Commissioner for Health and Animal Welfare

2019-2024                 
European Commissioner for Neighbourhood and Enlargement

2015–2019                
Permanent Representative of Hungary to the EU, Ambassador extraordinary and Plenipotentiary

2011–2015                
Deputy Permanent Representative of Hungary to the EU, Ambassador extraordinary and Plenipotentiary

2009–2010    
Head of the European Union Law Department, Ministry of Justice

2008–2011                
Head of Unit responsible for Industrial Property Rights, Directorate-General Internal Market and Services, European Commission

2003–2006
Head of the Legal Service, Permanent Representation of Hungary to the EU

2001–2003
Legal counsellor, Mission of Hungary to the EU

1998–2001
Head of Cabinet, Head of the Legal Unit, Ministry of Foreign Affairs, Cabinet of the Deputy Head of the State Secretary for Integration

1996–1998
Desk officer, Ministry of Foreign Affairs, Department for EC Harmonisation, State Secretary for Integration

1996
Desk officer, Ministry for Industry and Trade, Office for European Affairs, Department for EC Coordination and Harmonisation

Adam Jarubas, Ph.D - Member of the European Parliament, re-elected as the Chairman of the EP Public Health Subcommittee (SANT) in 2024, which became full EP Public Health Committee in 2025 with Mr Jarubas MEP as chair. In previous term, he worked also in the EP Special Committee on Beating Cancer (BECA). This term he continuous his work in the EP also in the Committee on Industry, Research and Energy (ITRE) and Committee on the Environment, Public Health and Food Safety (ENVI).

A graduate of the Świętokrzyska Academy in Kielce. In 2018, at the Jan Kochanowski University in Kielce, he obtained a PhD in social sciences and regional policies. Assistant professor at the Institute of International Policy and Security.

In the years 2006-2018, Marshal of the Świętokrzyskie Voivodeship.

In the EP, he focuses on public health, green transformation and digital transformation in the EU, coordinating the work of the Polish delegation in the Group of the European People's Party in these areas.

Dr 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) 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 coordinates the Health are during the Spanish Presidency of the EU

At the Ministry of Health, Urszula Demkow initiates, coordinates, and supervises the work of various departments, including the Department of Healthcare in matters related to rare diseases.

Urszula Demkow graduated from the Faculty of Medicine at the Medical University of Warsaw (WUM) and completed postgraduate studies in health care management at the University of Warsaw. As professor of medical sciences, she holds specializations in internal medicine (second degree), immunology, allergology and laboratory diagnostics.

From 2020 to 2022, Urszula Demkow was a head of the University Center for Laboratory Medicine. Currently, she heads the Department of Laboratory Diagnostics and Clinical Immunology of the Developmental Age at the Faculty of Medicine at WUM.  She is a member of numerous scientific societies, including, among others, the Polish Society for Personalized Medicine and the Committee on Immunology and Etiology of Human Infections of the Polish Academy of Sciences.

Urszula Demkow is an expert of the European Commission for financing projects in the field of medicine and a plenipotentiary of the Rector of the Warsaw Medical University for equality.

She was also a chief editor of the Central European Journal of Immunology.

Anne-Sophie Lapointe has been directly affected by rare diseases, with two of her children suffering from a lysosomal disease. For 15 years, she sat on the boards of national and European rare disease associations. She was appointed member of the INSERM ethics committee for nearly 6 years.

Anne-Sophie Lapointe has a PhD and two Master's degrees in health ethics and economics. She worked as a project manager for the AnDDI-Rares rare diseases health network and was able to build with Orphanet axis 4 of the National Plan for Rare Diseases 3 (PNMR3) on information, training and e-health. Since October 2018, having put an end to her associative mandates, she has joined the Ministry of Health in the rare diseases mission. She has now been in charge of the project since January 2021, steering and coordinating the actions from the PNMR3 and the new action plan launched on 25^th of February 2025. In this capacity, she sits on the European Commission's board of Member States for the European reference networks (ERNs) for rare diseases and coordinates WP8 data management with the Netherlands for the joint action (JA JARDIN) funded by the EU4HEALTH programme. She is also engaged in the Governance for the MoH in the ERDERA project. 

Martina Brzková has been working at the Ministry of Health of the Czech Republic since 2008, where she has held a variety of roles within the International and EU Unit and later in the Healthcare Services Department. From 2015 to 2016, she served as Head of Unit for Health Social Services, focusing on long-term care, social exclusion, ageing, and health services for vulnerable populations. From 2016 to 2023, Martina served as Health Attaché at the Permanent Representation of the Czech Republic to the EU in Brussels, where she represented national interests in the areas of public health, pharmaceuticals, and medical devices. She was actively involved in both the first and second Czech presidencies of the Council of the EU. After returning from Brussels in the summer of 2024, Martina rejoined the Ministry of Health, where she now focuses on rare diseases and substances of human origin. She holds a Master’s degree in Civil Sector Studies from Charles University in Prague and has a background in epidemiology and hygiene from earlier medical studies.

Donata Meroni is Head of the Unit ‘Health monitoring and cooperation, Health networks’ dealing with rare diseases, cross border healthcare policies, health information and Scientific Committees, in the Public Health Directorate of DG SANTE, European Commission. She was previously Head of the Unit dealing with health Promotion and diseases prevention and funding instruments, and head of the ‘health and food safety’ Unit in the Executive Agency for Consumers, Health, Agriculture and Food (CHAFEA) in Luxembourg.

She has been working with the Commission since 2002. Before, she had worked in Italy for 13 years in both private and public sector. 

Krystyna Szymańska is a pediatric neurologist with over 40 years of experience in diagnosing and treating neurological disorders in children. I deal primarily with neurodevelopmental disorders, mainly those of genetic origin.

Krystyna Szymańska believes that the greatest challenge facing a pediatric neurologist is to translate knowledge and skills into significant improvement in the functioning of children with developmental disorders and their families. A sine qua non for the success of such a care system is close cooperation between clinicians, diagnosticians, scientists and families /patients.

Josep Figueras, MD, MPH, PhD (econ), FFPH is Director Emeritus to the European Observatory on Health Systems and Policies. He was previously the founding director of the Observatory and, in addition to WHO, he has served major multilateral agencies such as the European Commission and the World Bank and has worked as a policy advisor in more than forty countries within the European region and beyond. He is a member of several governing, advisory and editorial boards including the governance board of the European Health Forum Gastein. His research is on health systems and policy focusing on health systems comparisons, performance assessment, public health policy and knowledge brokering.

Luca Sangiorgi, Director of Department of Rare Skeletal Disorders, is the coordinator of the Rare Diseases Centre of Rizzoli Ortopaedic Institute since 2006 and responsible of 4 National Registers of Rare Disease (Multiple Hereditary Exostoses, Osteogenesis Imperfecta, Ehlers-Danlos Syndrome, Ollier Disease and Maffucci Syndrome). He’s the coordinator of BIOGEN, diagnostic and research genetic biobank, and of Telethon Network of Genetic Biobanks.

From March 2017, he’s the coordinator of the European Reference Network on Rare Bone Disorders (ERN-BOND).

Luca Sangiorgi participates as coordinator or partner in more than 20 national and international research projects, including: European Joint Programme On Rare Disease EJP-RD, MCDS-Therapy Project, The European Registry for Rare Bone and mineral conditions (EuRR-Bone).

He’s the first author who has contributed to more than 100 articles published in impacted (Index H: Scopus 25 Google Scholar 27).

Eileen Treacy is Clinical Professor of Medicine of Rare Disorders at Trinity College Dublin, and a Full Clinical Professor at University College Dublin. She obtained specialist training in Paediatrics, Clinical and Biochemical Genetics in Canada, with travelling fellowships at the Murdoch Institute, Melbourne, Australia, and Necker Enfants Malades, Paris with a subsequent academic appointment at McGill University Montreal, Canada. Subsequently from 2000 to 2023, she was appointed as a metabolic consultant at Childrens University and Mater Misericordiae University Hospitals Dublin (to 2020), and Mater Misericordiae University Hospital (to 2023).

Prof. Treacy was appointed as the Irish National Clinical Lead for Rare Diseases from 2014- 2021, and as Clinical Lead for the Irish National Rare Diseases Office from 2021-2024. She played a central role In the development and implementation of Ireland’s first National Rare Diseases Plan (2014-2018) including the development of the National Rare Diseases Office, and for the development work for the current Irish National Rare Diseases Strategy. From 2013-2024,  she held a national leadership role in numerous rare disease expert groups, rare disease joint actions, and committees at national and European level, including as representative to the Board of Member States for European Reference Networks.

Professor Treacy has specific clinical research interests in Rare Diseases, Inherited Metabolic Disorders and Galactosaemia (as a member of the GalNet international Steering Group), and has published extensively in these areas. 

Features:
The General Secretariat for Digital Health, Information, and Innovation of the National Health System is the governing body of the Department responsible for addressing projects for the modernization, innovation, improvement, and transformation of the National Health System in light of the new challenges arising from the COVID-19 pandemic, particularly those related to digital health and information systems. It is also responsible for carrying out activities aimed at transferring innovation and research advances to the National Health System, without prejudice to the powers assigned to the Ministry of Science and Innovation and the Autonomous Communities. It is also responsible for developing information systems, managing information, identifying the protected population, and ensuring access to clinical and therapeutic information. It is also responsible for overseeing health information, within the scope of the Department's powers.
Academic Qualifications:
Bachelor's Degree in Computer Science (Polytechnic University of Madrid) 1992.
Master's Degree in Information and Communications Systems and Technologies Management (Knowledge Engineering). Polytechnic University of Madrid. 1998.
Senior Management Program (PAD): Public Policies. National Institute of Public Administration.
He belongs to the Senior Corps of Information Systems and Technologies of the General State Administration.
Professional Experience:
Director General of Digital Health and Information Systems for the National Health System
from August 2020 to August 31, 2021.
Deputy Director General of Information Technology at the Ministry of Health from 2011 to August 2020.
Deputy Deputy Director General of Information Technology at the Ministry of Health from 2002 to 2011.
He has held various positions related to information and communications technology at the Ministry of Defense, the Spanish Data Protection Agency, and the Ministry of Public Administration.

Lori Renna Linton has been a Patient Advocate in the European Reference Network for Rare Neurological Diseases (ERN-RND) representing Hereditary Spastic Paraplegia (HSP) since 2017. She co-created the Patient Journey for HSP, an info-graphical overview that visualizes patients’ needs in the care of their rare disease.

Lori’s documentary, Pass Me the Potatoes, Please was chosen by the Rarely Told Stories team and was screened at the Global Genes Week in Rare conference in September 2024. Her goal is to challenge the perception of People Living with a Rare Disease. She is also an English Literature teacher in the International Baccalaureate program at a public school in Austria. 

Professor 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.
• Director European Consortium for Epilepsy Trials.
Publications: He has authored/co-authored seven books and over 200 peer reviewed scientific publications.

Kaja Kantorska is a biotechnologist from education. She obtained her degree at the International Faculty of Engineering at the Lodz University of Technology in Poland. She has been working since 2009 in the European Commission, DG SANTE. For seven years she has worked in the GMO field where she was responsible for the authorisation of the GM food and feed in the EU and she has worked closely with the European Food Safety Authority.

In 2016, she has moved to the human health division of DG SANTE where she is responsible for the development of the policy and authorisation of medicines for rare diseases and other dossiers like biotechnology. She works closely with the European Medicines Agency and the network.

She is a passionate skier in winter and a hobbyist gardener in warmer months.

Daria Julkowska has a PhD in molecular biology and pursued her scientific vocation by the post-doctoral experience in cellular biology, at Institut Pasteur, Paris and extensive training in communication and European Union counselling. She also holds MSc in Management of Research from the University of Paris Dauphine. She coordinated the European Joint Programme on Rare Diseases and is currently the scientific coordinator of ERDERA rare diseases partnership that brings together over 180 institutions representing different type of stakeholders (researchers, funders, clinicians, industry & patients) from 36 countries from Europe and beyond. She is involved in the rare diseases field since 2010. She developed and put into action a set of collaborations facilitating research, including the partnerships with European Research Infrastructures, Patients’ Organizations and industry. She has an extensive knowledge and understanding of European funding schemes and programmes and serves as the chair of the Expert Group on support for the strategic coordinating process for European partnerships of the European Commission. In 2020 she received EURORDIS Black Pearls Award for the European Rare Diseases Leadership. This year (2024) she obtained the title of “Wybitny Polak” in France, a competition promoted by the Polish Promotional Emblem Foundation, the main goals of which are to create a positive image of Poles, show their achievements and distinguish and promote people who have achieved success in the country and abroad.

Eulàlia Olesti is a Regulatory/Scientific Manager at the Clinical Pharmacology Department of Hospital Clínic de Barcelona, specializing in the scientific and regulatory assessment of Advanced Therapy Medicinal Products (ATMPs). With extensive experience in coordinating regulatory strategies for developing ATMP products in academic settings, she has contributed to the academic development of CAR-T therapies, including ARI0001, ARI0002, and others. Eulàlia holds a PhD and has published over 15 first-author articles in peer-reviewed journals. She has also participated in more than 10 oral presentations at international medical congresses.

In addition to her scientific and regulatory expertise, Eulàlia has substantial teaching experience at both the bachelor and master levels at national and international universities. She also completed an extended professional stay at the Spanish Medicines Agency (AEMPS), gaining valuable experience in regulatory affairs. Her work focuses on bridging scientific research with clinical practice, ensuring the regulatory success and academic development of advanced therapies. Driven by a strong background in clinical pharmacology, she is dedicated to bringing therapies closer to patients.

Katarzyna Piotrowska-Radziewicz has experience in the field of drug policy as an institution in the Chief Pharmaceutical Inspectorate, Ministry of Health, and later as a legal adviser running her own practice. Since February 2024 Director of the Department of Drug Policy and Pharmacy at the Ministry of Health. As part of the Polish presidency responsible for work on the pharmaceutical package and the Critical Medicines Act.

Tacjana Wilczyńska is the Head of the Children's Palliative Care Clinic (NGO), consultant of the mobile palliative care unit of the Kyiv City Children Diagnostic Centre, partner of the Warsaw Children's Hospice (Ukraine). Paediatric/Clinical Dietitian of Med-24 telemedicine clinic (Poland). Graduate of Faculty of Health and Wellbeing, Department of Radiotherapy and Oncology of Sheffield Hallam University (UK) and the Institute of Dietetics at the Higher School of Business and Health Sciences (Poland). Medical expert for the European Union Advisory Mission in Ukraine (EUAM Ukraine) during the COVID-19 pandemic.  Former member of the working groups of the Ministry of Health of Ukraine (2008-2013). Author of several publications in peer-reviewed scientific journals, speaker at national and international conferences. Member of the Ukrainian Academy of Paediatric Specialties (UAPS), International Association of Hospice and Palliative Care (IAHPC), Polish Society of Parenteral and Enteral Nutrition (POLSPEN).

Tatiana Makarevich is a Public Health Support Officer at the WHO Country Office for Poland, specializing in joint infectious diseases and health sector coordination within the Refugee Response Plan. She holds a Master’s Degree in Business Administration and Management and has over 15 years of experience in international public health projects and programs, including roles at UNDP, UNICEF, UNAIDS, and WHO. Tatiana has worked across multiple countries in the WHO European Region, with a particular focus on post-Soviet states.

Prof. Ruth Ladenstein, MBA, cPM is a Paediatric Oncologist and Professor at the St. Anna Children’s Cancer Research Institute (CCRI), Vienna, Austria. A graduate of the Medical University of Vienna (MD, 1982), she specialized in Paediatric Oncology, earning her board certification in 1992 and professorship in 2012.

Prof. Ladenstein has led groundbreaking international collaborations, chaired SIOP Europe (2009–2012) and the SIOPEN group (2007-2011) and led SIOPEN’s High-Risk Neuroblastoma trials since 2002. She served as Cancer Mission Board Member for the European Commission (2029-2021) and is currently Chair of the EU-US Taskforce on Cancer (2023–2025) and TRIO Chair for the European Reference Networks (as chair of ERN PaedCan) (2024–2027).

Apart from over 220 peer-reviewed publications, she has coordinated major EU-funded projects advancing paediatric cancer research and survivorship care. Her expertise spans project management, networking, and building impactful organizations dedicated to improving outcomes for children with cancer.

Virgine Bros-Facer returned to EURORDIS-Rare Diseases Europe in March 2024 to take on the role of CEO, after having previously served as the organisation's Scientific Director.

Virginie received her PhD in Neurosciences from King’s College London, UK followed by several postdoctoral research projects at the Institute of Neurology, UCL, London focused on testing therapeutic strategies for Amyotrophic Lateral Sclerosis. After leaving the lab, she worked for several research funding organisations in the UK including the National Institute for Health Research, the Medical Research Council and as Medical Director for Sparks, a medical research charity focusing on rare paediatric diseases.

Upon subsequently joining EURORDIS as Scientific Director, she took the lead on project development and patient engagement in rare disease research projects representing the voice of rare disease patients, including within the International Rare Disease Research Consortium (IRDiRC). Virginie led in the creation of the EURORDIS Winter School on Scientific Innovation and translational research, aimed at empowering people living with a rare disease to fight for their rights to a better and healthier future.

In 2022, Virginie joined Illumina as Associate Director for Medical Affairs, Europe, where she engaged key opinion leaders and centres of excellence to develop clinical evidence for genetic testing of rare and undiagnosed patients to drive clinical adoption of next-generation sequencing and implementation in patient care.

Maurizio Scarpa, MD PhD, paediatrician, is the Director of the Regional Coordinating Centre for Rare Diseases at the University Hospital of Udine, Italy. He is Professor of Paediatrics at the Dept. for the Woman and Child Health, University of Padova, Italy, and the Co-Founder of the Brains For Brain Foundation, together with Prof. David Begley, Kings College of London, London, UK. Prof. Scarpa has extensive expertise as a basic scientist in genetics and biotechnology, as well as a clinician in the diagnosis and treatment of paediatric rare disorders; neurometabolic diseases in particular. Together with dr. Christina Lampe he founded the Center for Rare Diseases at the Helios Dr. Horst Schmidt Kliniken in Wiesbaden, Germany. He is especially interested in developing innovative health approaches for the diagnosis and the treatment of metabolic inherited diseases; to this aim he is also collaborating with major biotech companies as an external independent expert. Prof. Scarpa is the Coordinator of the European Reference Network for Hereditary Metabolic Diseases (MetabERN), formed by 101 healthcare providers in 27 EU countries.

Felipe Gómez Martín is a paediatrician who worked for many years as neonatologist at University Hospital La Paz (Madrid) and Germans Trias Hospital (Badalona), with high expertise in rare diseases and congenital disorders. He is currently a policy maker at the Ministry of Health of Spain, participating in the CSUR project and the European Reference Networks. He collaborates with some teaching centres.

Bruno Rodrigues studied economics and holds a PhD from the University of Strasbourg and currently works as the Head of Stats and Data Strategy at the Ministry of Research and Higher Education in Luxembourg. Trained as a data scientist, he connects technical ideas with policy decisions.

Bruno has been contributing to the different projects of the 1+Million Genomes initiative since 2020.

He now chairs the monthly meetings for the Genomic Data Infrastructure project, part of the 1+MG initiative, helping to create a new organization that will make European-wide genomic medicine a reality.

Lene Cividanes is Head of Health, Research and International Relations at the Danish National Genome Center. She is a political scientist by training and very experienced within the field of research and health policy especially implementation of personalised medicine.

Lene Cividanes has been working at the Danish National Genome Center almost since it was established back in 2019 and she has been a key player in the development of the Center and the implementation of personalised medicine and secondary use of genome data in Denmark.

Among other tasks Lene Cividanes and her team are responsible for DNGC’s research services, advisory boards, international collaborations, the representation of Denmark in the 1+ Million Genomes, the Genomic Data Infrastructure Project, the Genome of Europe Project and the coordination of a 1+Million Genomes working group on health economics and outcome research.

Hélène Le Borgne is a policy officer for research on rare diseases and health systems, Directorate-General for Research & Innovation, European Commission.

Born in Brittany, France, Hélène graduated in political sciences and international affairs. After work experiences in the field of education, social affairs, youth and sports in Germany and France, Hélène joined the European Commission (EC) in 2009. She worked firstly for 10 years as policy officer for the Directorate-General (DG) for Health & Food Safety, in the successive fields of health communication, health threats, organ donation and transplantation as well as rare diseases (European Reference Networks). She joined the EC Directorate-General in charge of Research & Innovation in January 2020, where she now works on research on rare diseases and health systems, supporting for example the preparation of the co-funded European Partnership on Rare Diseases (ERDERA: European Rare Diseases Research Alliance).

https://research-and-innovation.ec.europa.eu/research-area/health/rare-diseases_en

https://cordis.europa.eu/project/id/101156595 

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. 

Holm Graessner has graduated in Biomedical Engineering, Cybernetics, Electrical Engineering, German Language and Literature, Philosophy as well as Business Administration. He received his PhD “Summa cum laude” in 2004 and, then, he obtained his MBA degree in 2008.

He has been Managing Director of the Rare Disease Centre, since 2010, at the University and University Hospital Tübingen, Germany. He is Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND). Together with Olaf Riess, he coordinates the H2020 Solve-RD project on “Solving the unsolved rare diseases”.

Since 2020, as a fellow of the European Academy of Neurology (EAN) he has been a member of the management teams of the Neurogenetics Panel and the Rare Neurological Disease Coordinating Panel of the EAN.

In 2023, he received the EURORDIS Black Pearl Award for Leadership and the first Martha and Wilfried Ensinger Award.

Joni Komulainen has been a social affairs and healthcare and eHealth lawyer for more than 20 years working for the Department of Social and Healthcare in the city of Helsinki, the Finnish Institute for health and welfare (THL) and since 2018 as a senior ministerial adviser in the Ministry of Social Affairs and Health, Finland. Mr. Komulainen has been involved in EU level eHealth legal law work and Finnish laws including The Act on the secondary use of social and health data, The new Act on the electronic processing of social and healthcare data, Covid-19 tracing app and Covid-19 passport legislations and the data protection part on the large scale social and healthcare reform.

Joni Komulainen has negotiated the European Health data space regulation in the Council working party, The Framework Convention on Artificial Intelligence in the CAI committee and was the chair of the Council of Europe’s Steering Committee for Human Rights in the fields of Biomedicine and Health (CDBIO) drafting group that drafted the report on impact of AI on the patient-doctor relationship https://www.coe.int/en/web/bioethics/ai-in-healthcare.

Szymon Bielecki is Head of Sector at the European Commission, Directorate-General for Communications Networks, Content and Technology (DG CNECT). He works on the design and implementation of actions related to health data infrastructures for research, innovation, personalised medicine and public health under Digital Europe and other funding schemes. Among others, he supervises DG CNECT’s support for the European 1+ Million Genomes initiative and for actions fostering health data re-use, e.g. related to the European Health Data Space or application of Artificial Intelligence in the health sector. 

Ágnes Cser

From 2004 - Member of the European Economic and Social Committee, member of several committees, former SOC Section vice-president, founding member of the EU-China Civil Society Roundtable

Advocate/barrister,

Healthcare manager,

ITC-ILO Interregional Trade Union Training on Social Security,

Former Elected and appointed to be the Director-General of the Hungarian National Health Insurance Administration by the Health Insurance Committee with the support of the Government,

President of MSZ EDDSZ Trade Union and Seventh Confederation

Member of Presidency of National Economical and Social Council of Hungary (NESC of Hungary)

International and national representative of Hungarian Children and Youth Care Association,

Some presentations:

• Health for All! Health and Water in All Policies (Dakar, 2011)
• First World Conference on the Development of Universal Social Security System, speaker (Brasilia, 2010)
• Shanghai World Expo, China, “Healthy Cities” World Conference, invited by the EU Commission (2010),
• Combating Poverty and Social Exclusion (Budapest, 2010)
• Inequalities and the Social Model of the Disabled (Paris, 2009)
• European Patients’ Rights Day (Budapest, 2008)
• Patients’ Rights Day 18th April Active Citizenship Network (Rome, 2008)
• “Health and Migration” (European Conference, Lisbon 2007)
• “Social Health Security for All” (Conference Berlin 2005)

Rapporteur:

• Leaving No One Behind: European Commitment to Tackling Rare Diseases (2024)
• TEN/832 own-initiative opinion: „Towards an EU maritime strategy: Navigating into the future through coordinated investment policies, legislative initiatives, social dialogue and involving civil society” (2024)
• EU-China Round Table Conference written report: „Strengthening EU-China cooperation in the field of circular economy” (2024)
• EUROPEAN COMMISSION White Paper “Together for Health: A Strategic Approach for the EU 2008 - 2013”
• European action - Rare Diseases, Proposal for a Council Recommendation on a European action in the field of rare diseases (2009).