Speakers

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.

Jaime Lafita Bernar (Bilbao, Spain, August 14th, 1963) economist and industrial entrepeneur in the Basque Country. Married in 1991 to Lourdes Zuloaga, with whom he shares his life since 1983. They have two sons, Diego (30) and Alvaro (27) and a daughter, Teresa (22). He has practiced sports all his life until his ALS diagnose in 2016 made him gradually quit surfing, skiing, golfing…but not cycling, which he still does on a tandem driven by his son Diego or friend Mario. Together with relatives and Friends he starts in 2019 dalecandELA, a non profit organization to raise awarness about ALS and also raise funds to help research on ALS and to those living with it.
During these four years, dalecandELA has donated 450,000€ raised through private donations and collaborations on several challenges and events that include their BrussALS Challenge (sailing and biking from their hometown to Brussels) or TeidELA (climbing the Teide volcano from sea level to its 4,000 meter Summit) and music festivals and coaching sessions.

Fui jugador de fútbol durante 17 años en primera división en el Osasuna, FC, Barcelona, Sevilla, Tenerife y Oviedo. Cuando me retiré fui entrenador de porteros durante ocho años en el FC Barcelona. Segundo entrenador en el Celta y en el FC Barcelona y primer entrenador en el Celta, Girona y Numancia.

Fui diagnosticado Con ELA en julio del 2019, y desde entonces estoy centrado en dar visibilidad a nuestra enfermedad y conseguir recursos económicos para la investigación y ayuda a las asociaciones que se encargan de cuidar a los enfermos.

I am Emilia Málaga, current president of the Basque Economic and Social Council. I was born in 1971 in Portugalete (Bizkaia) and I have a degree in Law from the University of Deusto. I have dedicated a large part of my life, both socially and professionally, to the Spanish Commission for Refugee Assistance and the UGT union, where I assumed responsibilities almost always linked to the areas of Equality.

In 2015, I became the General Secretary of the Basque Economic and Social Council and, in 2019, was appointed its president. Being the first woman to hold the position, I aspire in this regard not to be an anomaly.

Gotzone Sagardui Goikoetxea, born in Bilbao in 1966, has a degree in Medicine from the University of the Basque Country UPV / EHU. She has an international master's degree in university management and another master's degree that qualifies her as a senior technician in Occupational Risk Prevention. She speaks three languages, Spanish, English and Basque, the later being her mother tongue as well as knowledge of French and German.

She is an official of the UPV / EHU where she has hold different responsabilities, most of them related to Human Resources. Through her professional career she has hold positions of responsibility in the healthcare field, as is the case of the center in Leioa corresponding to the Foral Institute of Social Assistance of Bizkaia. Later, she was called to join the Basque Goverment as director of Labor Activation of the Basque Employment Service, Lanbide.

In 2016 she made the leap to parliamentary activity, occupying a seat in the Basque Chamber. Later she began her municipal career in the Bilbao City Council under the guidance of Mayor Juan María Aburto, leading the Economic Development and Good Government portfolio in a first term and later being appointed Deputy Mayor and head of the Governance and Strategic Projects portfolio. During that time she led the European projects of the City Council in addition to belonging to various management boards (Water Consortium, Elkarkidetza, Port of Bilbao, etc.) until being appointed Health Minister of the Basque Government in 2020 by Lehendakari Iñigo Urkullu.

Gotzone Sagardui is married, has two sons and a daughter.

Iñigo Urkullu Renteria has been the Lehendakari (President) of the Basque Govenrment since 15 December 2012, the day on which he took his oath of office under the Gernika oak tree. Iñigo Urkullu has been committed to politics from a young age. He was chairman of the Euskadi Buru Batzar, the National Executive Committee, of the Basque Nationalist Party (EAJ-PNV) between 2007 and 2012. He had previously chaired the Bizkaia Territorial Executive (BBB) for eight years.

During his four terms as a member of parliament for Bizkaia in the Basque Parliament (1994-2007), he sat on different committees, including the Education and Culture Committee, the Special Committee on Self-government, or the Committee on Legislative Urgency, Regulations and Government. During three terms of office, he chaired the Human Rights Committee (1998-2008). He was also a member of the Basqye Languate Advisory Board (1994-2001) and previously of the University of the Basque County (EHU-UPV) Social Council.

Lehendakari Urkullu is a teacher by profession. He studied a Degree in Teacher Training, specialising in Basque Philology. He taught at the Asti-Leku Ikastola Basque language school in Portugalete and at the Colegio Público Félix Serrano school in Bilbao, after obtaining his tenured place in the public education system. Born in Alonsotegi (Bizkaia) in 1961, Urkullu is married and has two sons and a daughter.

Ana Diaz-Emparanza

DalecandELA 

Bilbao 1957.

University of Deusto

Former official of the European Commission. 

Lately member of the European Reference Network team (ERN) at Directorate General for Health and Food Safety. 

During the last 15 years of her European career she worked in the field of cross-border healthcare and rare diseases.

After her retirement, she came back to Getxo, her hometown, and joined DalecandELA.org in 2021 to volunteer in the fight against ALS.

ES:

Ana Diaz-Emparanza

DalecandELA

Bilbao 1957

Universidad de Deusto

Antigua funcionaria de la Comisión Europea.

Fue, desde su creación, miembro del equipo de Redes Europeas de Referencia (ERN) en la Dirección General de Salud y Seguridad Alimentaria.

Durante los últimos 15 años de carrera europea trabajó en el campo de la asistencia sanitaria transfronteriza y de las enfermedades raras.

Tras jubilarse, regresó a su ciudad, Getxo, y desde 2021 colabora con DalecandELA.org en la lucha contra la ELA.

Marie Möllberg 52 years old born and raised Stockholm Sweden diagnosed with ALS 2015 and I am a patient expert at EUPALS. I also run the biggest support facebookgroup in Sweden "Tillsammans mot ALS"

I'm Sara Calvo. Diploma in Management and Public Administration. I have developed my professional career in different areas of administration in private companies, although I am currently a technician in unemployment benefits.

In 2011, my husband was diagnosed with ALS. He died in 2017 from the disease at the age of 38. I have two children from my marriage, Leo, 14 years old, and Miguel, 6. The experience with this disease has allowed me to be in contact with the associations of sick people from different territories, being able to learn in depth about their great work and work. Since 2020, I have chaired the territorial association of ADELA ÁLAVA and since 2021, the Federation of ADELA EH, an entity that includes the three provincial associations of the Basque Country. Furthermore, in April 2022, we were one of the founding entities of ConELA, the National Consortium of Entities with ALS, with our entity assuming the treasury until today.

The work of the entities that I represent is essential to help the daily lives of our sick people and their families. We are mainly made up of families who care for families voluntarily, with love and knowledge of the needs of all phases of the disease.

Sabine Turgeman, directrice générale de l’ARSLA. Diplômée de mathématiques, elle a rejoint le monde associatif un peu par hasard. Après une expérience de volontariat en Inde, elle a rejoint l’AFM-Téléthon. Responsable du service des délégations, elle gérait une équipe d’animateurs en contact direct avec les personnes malades sur toute la France. Ensuite, elle a rejoint une association qui œuvrait contre les violences faites aux femmes. Souhaitant se spécialiser dans la communication, elle a obtenu son diplôme d’un Master exécutive à Science po Paris. Avec son nouveau poste à l’Alliance Maladies Rares, elle a pu développer des projets de communication. Enfin, elle a rejoint l’ARSLA, en tant que directrice générale en mars 2020.

Luís Filipe Gonçalves da Silva is Physiotherapist and Project Manager at the Portuguese Association of Amyotrophic Lateral Sclerosis.

Degrees in Physical Therapy and Dietetics/Nutrition Sciences. Master in Cognitive Science. PhD student in Health Sciences.

Evy Reviers - Being daughter of a patient with ALS is my strong motivation to be an ALS patient representative.

Besides being CEO and Chairwoman of ALS Liga Belgium, I founded and chair EUpALS – the European Organization for Professionals and Patients with ALS. We unite 28 European ALS Associations from 22 European countries, defending the rights of all European patients with ALS with emphasis on advocating EU harmonization of access to ALS clinical trials and future medicines.

Also at the European level, I am a patient representative at the European Medicines Agency (EMA), member of the EURORDIS Drug Information, Transparency and Access (DITA) Task Force, and via EURORDIS involved in the ERN EURO-NMD Patient Advocacy Group. Furthermore, I am a member of the Executive Board of TRICALS and of Project MinE, and a member of the Working Group on the European Academy of Neurology (EAN) Guidelines on management of ALS.

At the global international level, I am a member of the Board of Directors of the International Alliance of ALS/MND Associations.

Rosario Sánchez-Pernaute, MD, PhD, Ikerbasque Research Professor, is a neurologist and neuroscientist who recently joined BioBizkaia Health Research Institute to lead research in stem cells and develop personalized therapies for Neurodegenerative Disorders. She uses cellular reprogramming and 3D human in vitro models to study disease mechanisms and investigate the effect of therapeutic approaches.

Jone López Erauskin is Assistant Project Scientist at the Laboratory of Professor Don W. Cleveland at the University of California San Diego (UCSD). She earned her Bachelor of Science degree in Biotechnology from the Autonomous University of Barcelona (UAB) and her Master’s in Biomedicine from the University of Barcelona (UB). She developed her PhD studies on X-linked Adrenoleukodystrophy at the Institute of Biomedical Research Bellvitge (IDIBELL – UB) and moved for her post-doctoral studies to the US. Her research is centered in the identification of disease mechanisms in Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Dementia (FTD), specially focusing on axonal degeneration. She is author of several peer-reviewed scientific publications and has largely contributed to the characterization of local intra-axonal translation deficiencies in FUS-ALS, and to the discovery of the loss of Stathmin-2 as a new hallmark for TDP-43 proteinopathies, including sporadic and familial ALS.

Vincenzo Silani is Professor of Neurology, Director of the Department of Neuroscience and Laboratory of Neuroscience at the IRCCS Istituto Auxologico Italiano – University of Milan Medical School, and Director of the “Dino Ferrari” Center for Neuromuscular and Neurodegenerative Disease in Auxologico since 2002. he was post-doctoral fellow in the Department of Neurology at the Baylor College of Medicine, Houston, USA (1979-1981), and then Visiting Professor of Neurology at Baylor (1999). He was co-chairman (2002-2005) and chairman (2005-2007) of the European ALS Consortium (EALSC); co-Director of the European Academy of Neurology Subspeciality Panel for ALS and Frontotemporal Dementia (2003-2019); and elected as FEAN and FAAN.  He is internationally recognized as a leading scientist in ALS/FTD and he established an ALS/FTD Centre in Milan with a large database of familiar and sporadic cases. He founded the SLAGEN Consortium (2010) for genetics and he is active in ENCALS, Project MinE, TRICALS, and NEALS. He largely contributed in defining the expression of new genes in both SALS and FALS, investigating the functional role of TDP43, FUS/TLS, and C9ORF72 using human motor neurons derived from iSCPs. He is author of more than 450 scientific publications and he has been P.I. of several clinical trials. He is since 2017 part of the ERN EURO-NMD and in 2023 appointed as chair and co-chair of the ERN EURO-NMD expert working group on motor neuron diseases.

Eduardo Jauregi, CO-Founder and CEO, Electronic Engineer (TECNUN University of Navarra '96) and MBA (University of Deusto '04). I started my professional career in the engineering department of a family SME. In 2006 I joined ASSA ABLOY, a multinational leader in access control, to promote the R&D department.

In 2013 I decided to create my own company and launch a global business based on a disruptive technology based on eye tracking providing an alternative communication solution based on gaze tracking with a socially innovative approach.

Today, thanks to our mastery of artificial intelligence and computer vision techniques, IRISBOND provides a new form of natural communication for humans through eye tracking technology in markets as diverse as assistive technology, digital health, robotics, and neuromarketing.

Prof. Dr. med. Julian Grosskreutz a clinician scientist with a strong interest in translational neuroscience to develop new therapies in neurodegenerative diseases, in particular amyotrophic lateral sclerosis (ALS). 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) on key molecular mechanism in neurodegenerative diseases. Since 2007 an independent researcher, Ihe has built a large translational center for patients with neuromuscular and motoneuron diseases in Thuringia 2007-2021 during which he coordinated EU wide research projects on ALS under the NEURON ERA-NET and JPND programs. In August 2021 he took on the position of Chair of Precision Neurology of Neuromuscular and Motoneuron Diseases at the University of Lübeck, Germany. He coordinates the global MRI repository of the Neuroimaging Society in ALS (NiSALS) and cooperates on a national, European and global level with motoneuron disease researchers and clinicians to model disease progression and surrogate marker driven stratification in the development of new clinical trials.

Antonio García del Riego - Soy padre de tres hijos, abuelo de dos nietos y miembro del Comité Económico y Social Europeo desde el año 2020, en el que me centro principalmente en opiniones centradas en el Economia, Finanzas y Mercado único. Esto refleja mi amplia experiencia en el sector financiero, en el que he trabajado durante casi 40 años.

He trabajado para los dos bancos españoles mas internacionales, por  presencia y vocación, en siete centros financieros internacionales, como Nueva York y Londres, pasando por Paris, Hong Kong, Ginebra, Madrid y Bruselas.

Tengo licenciatura en  economia,soy Becado Fulbright y MBA.

Dr. MEP Stelios Kympouropoulos is a Greek psychiatrist and politician and has been serving as a Member of the European Parliament since 2019. He joined the European People’s Party. He is a member of the Committee on Employment and Social Affairs (EMPL), Committee on Petitions (PETI). He is also a Member of the newly established Subcommittee on Public Health (SANT). In addition, he is a substitute member of the ENVI Committee; REGI Committee and the Subcommittee on Human Rights; and the co-chair of the Disability Intergroup of the European Parliament. He holds a master in "Mental Health Promotion - Prevention of Psychiatric Disorders" and a BA in Medicine from the Department of Medicine of the National and Kapodistrian University of Athens. In 2013, he pioneered the organization of the first Greek delegation to the pan-European event "Freedom Drive", which became the springboard for the creation of the first Independent Living Organization of Greece, "I-Living!", which is an urban non-profit company run exclusively by individuals with a disability.

Andrea Gasper is a nurse trainer for palliative care, certified case and care manager and is active in this function in the ALS special outpatient clinic of the University Hospital Bonn.

Raquel Barajas Azpeleta is the Head of the Research Department of Luzón Foundation. She studied her Bachelor's and Master's degrees in Genetics and Cell Biology at the Autonomous University of Madrid, in Spain. She moved to the USA, where she obtained her PhD in neurobiology from the Stowers Institute for Medical Research, where she discovered the role of antimicrobial peptides in long-term memory formation. She did her postdoctoral training at the Champalimaud Foundation in Portugal, where she studied the role of proteins in the brain to drive feeding behavior.

My name is Izaskun Bilbao Barandica. I was born in Bermeo on 27 March 1961. I am the daughter and granddaughter of fishermen. Such a hard reality as fishing has taught me to value effort, sacrifice, humility and hard work, tenacity and to be proud of my roots. I earned my first salary by packing tin cans.

I have a degree in law from the University of Deusto and a master's degree in business management (UPV). In addition to Basque and Spanish, I speak French and have an elementary level of English.

I am on leave of absence from the Town Council of Kortezubi. I was a councillor in Bermeo and I have worked in the Departments of Culture and the Interior in the Basque Government, in both cases as Director of Services. I was the first woman to chair the Basque Parliament. During that legislature, I was also president of CALRE, the Conference of Regional Legislative Assemblies of Europe.

After this experience in the Basque Country, citizens elected me as Member of the European Parliament and I have been working in Brussels and Strasbourg for two full terms and in the current term. I am part of the Renew Europe group. The international party to which the PNV belongs, the European Democratic Party, was a founder member of this parliamentary group. I have been a full or substitute member of the Transport, Fisheries and Women and Youth Committees. In this legislature, I am a full member of the Committee on Transport and Tourism and the Committee on Fisheries. I am an alternate member of the Industry (ITRE) and Equality Committees and vice-chair of the delegation for the Andean Community and alternate member of the delegation for relations with the United States.  I am also a member of the intergroup on traditional European minorities and minority languages.

JUAN MARIA ABURTO RIQUE

• 59 años, 1961 (Bilbao)
• Casado, con 2 hijos
• Alcalde de Bilbao, desde 2015 (2º mandato como Alcalde)

FORMACIÓN

• Licenciado en Derecho por la Universidad de Deusto (1979-1984)
• Diplomado en la Especialidad Jurídico Económica por la Universidad de Deusto (1979-1984)
• Diploma en Evaluación de Políticas Públicas.
• Idiomas: euskera e inglés

CARRERA PROFESIONAL

En Gobierno Vasco:

• Consejero de Empleo y Asuntos Sociales (2012-2015)

• Director de Servicios del Departamento de Interior (1991-1994)

En Diputación Foral de Bizkaia:

• Diputado foral de Presidencia, Teniente de Diputado General y Portavoz (2011 - 2012)
• Diputado foral de Acción Social (2003-2007 y 2007-2011). Portavoz desde el 2010
• Director General de Régimen Jurídico y Función Pública (1994-2003)

Apoderado en juntas generales de Bizkaia por EAJ-PNV (julio 2011- diciembre 2012)

Stella Kyriakides 

European Commissioner for Health and Food Safety Stella Kyriakides leads the work to put in place the foundations of a European Health Union. She is also responsible for the “Farm to Fork” strategy for sustainable food production and consumption.

Commissioner Kyriakides has been at the forefront of the EU public health response to the COVID-19 pandemic, Europe’s Beating Cancer Plan and EU efforts to support Ukraine and its people in the area of health.

Throughout her career, she has been a longstanding advocate for women’s, children’s and patients’ rights, and for better mental health.

Sandra Gallina joined the European Commission in 1988. She is today Director General for HEALTH & FOOD SAFETY.

Before joining DG SANTE, between 2018 and 2020 she was Deputy Director General for TRADE.

Between 2014 and 2018 she was Director for DG TRADE Directorate D “Sustainable Development; Economic Partnership Agreements - African, Caribbean and Pacific; Agri-food and Fisheries”. Sandra Gallina was also the EU chief negotiator for the EU-MERCOSUR Free Trade Agreement.

Between 2001 and 2009 she was the EU Lead Negotiator for Non-Agricultural Market Access in the WTO Doha Round and in that capacity, she defined and presented EU policy for the Doha Development Agenda on non-agricultural market access negotiations.

Before joining DG TRADE, she worked in the Directorate General for Taxation and Customs Union (DG TAXUD) at the end of the 1990s.

Oliver Röpke was elected as the president of the EESC in April 2023. Member of EESC since 2009, Mr Röpke was the president of the EESC Workers' Group, a member of the EESC Bureau and rapporteur of many EESC resolutions and opinions on employment and social policy, single market and innovation.

 Mr Röpke headed the Brussels office of the Austrian Trade Union Federation (ÖGB) and  took on several senior positions including as ÖGB representative to the EU institutions, the Executive Committee of the ETUC, and an advisory member of the ÖGB federal executive board. Mr Röpke has a legal background and holds a law degree from the University of Vienna.

Pilar Aparicio Azcárraga - Director-General for Public Health
Previous position: Director National School of Public Health of Health Institute Carlos III (ISCIII) and Director of the IMIENS Joint Research Institute, formed by the ISCIII and the Nacional Distance University (UNED).
Academic degrees: Degree of Medicine, Diploma in Tropical Medicine, Medical Doctor (phD), Specialization in Internal Medicine (MIR)
Main areas of research interest: Infectious diseases andmicrobiology applied to Public Health; Global health
Throughout her professional career, she has carried out different tasks in clinical-care areas (University Hospital of Mostoles in Madrid, Hospital Teodoro Álvarez, in Buenos Aires, Argentina); research applied to the epidemiology of infectious diseases (National Center for Microbiology of the ISCIII and Central Public Health Laboratory of England), teaching and activities related to international public health and technical scientific cooperation, aimed at strengthening public health systems and control of communicable diseases World Health Organization (WHO) and National Center of Tropical Medicine of ISCIII in different countries of Latin America and Africa.
Author of 32 peer-reviewed research publications
Main research projects: Health Cooperation Projects
Research project to support the Public Health Laboratory of Equatorial Guinea on: “Diagnostic and reference of Sexual Transmitted Infections” and control of Tuberculosis; Malaria; HIV and other  Neglected tropical diseases (NTD).
Researcher for WHO: “Assessment of the outbreak of Visceral Leishmaniasis in Libo (Amhara State)” and “Control of Leishmaniasis in the Horn of Africa”
Direction of a Cooperation programme against AIDS and other prevalent diseases in Guatemala, El Salvador, Honduras, Nicaragua, Dominican Republic and Haití.

Alain Coheur, infirmier de formation, diplômé par la suite en Sciences de la santé publique de l’Université de Liège (Faculté de médecine, école de santé publique) avec une spécialisation en gestion hospitalière et diplômé de la Faculté des sciences économiques et sociales. Il a commencé sa carrière au centre hospitalier universitaire de Liège. En 1991, il rejoint l'Union Nationale belge des Mutualités Socialistes (département de recherche) et prend part à la gestion du système belge de santé en étant membre du Comité de l’assurance de l'Institut national d'assurance maladie invalidité et du Conseil. National des Etablissements Hospitaliers au Ministère de la santé publique. Depuis 1997, il coordonne différents projets transfrontaliers en soins de santé entre la Belgique, la France, les Pays-Bas, l'Allemagne et le Luxembourg financés par les fonds européens, Interreg.

Entre 1998 et 2002, directeur de projets à l'Association Internationale de la Mutualité (AIM), depuis membre du Conseil d'Administration et élu Trésorier depuis  juin 2017.
Depuis 2002, Directeur des affaires européennes et internationales chez Solidaris.
Depuis 2004, membre du bureau de l'Association Internationale de la Sécurité Sociale (AISS).
Entre 2007 et 2016, Président de l’ONG Solsoc. 
En 2008 et 2015 président de Social Economy Europe et depuis lors Vice-Président.
Entre 2009 et 2023, vice-président du Réseau Education et Solidarité, lié aux questions d’éducation, de santé et de solidarité.
Depuis, 2013, membre du conseil d’administration de l’Agence belge de coopération au développement (ENABEL) et depuis 2021 Vice-président.Depuis 2014, membre du Groupe d'experts de la Commission Européenne sur l'Entrepreneuriat Social (GECES) et depuis 2020 membre en tant que représentant du CESE.
Entre 2014 et 2019, membre du Conseil Wallonie Bruxelles de la Coopération internationale (CWBCI) qu’il a présidé en 2017.
Depuis 2015, membre du Comité Economique et Social Européen (CESE), Entre 2015 et 2020 porte-parole de la catégorie économie sociale et président du groupe permanent d’études sur les entreprises de l’économie sociale. Depuis, 2020 président de la Commission Marché Intérieur, Producteur et Consommateur.
Entre 2018 et 2023, vice-président de l’Institut Montparnasse, think tank mutualiste sur les transformations des entreprises de l’économie sociale.
Depuis 2018, membre du Conseil d’administration du CIRIEC (section belge et internationale)
Depuis 2019, co-président du Forum International de l’Economie Sociale et Solidaire (ESS FI)
Depuis la rentrée académique 2022, Maître de Conférence à l’Université de Liège, Faculté de médecine, Ecole de Santé Publique.

Yann Le Cam was one of the founders of EURORDIS-Rare Diseases Europe in 1997. He is the organisation’s Chief Executive Officer since 2000.

Yann initiated Rare Diseases International (RDI) in 2009. He is an elected member of the RDI Council and Chair of the RDI Advocacy Committee. He is a founding member of the NGO Committee for Rare Diseases (United Nations, New York) in 2014 and its Vice-Chair. Yann is a Co-Chair of the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease since its launch in 2018. Yann is a member of the World Economic Forum’s Health Stewards Board from 2020 and of its Global Precision Medicine Council since 2019.

Recent past positions include: member of the Management Board of the European Medicines Agency (EMA) 2017-2019; Chair of the Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC), 2013-2017; Vice-Chairman of the EU Committee of Experts on Rare Diseases (EUCERD), 2011 – 2013; and a member of the Commission Expert Group on Rare Diseases, 2014 – 2017; member of the Committee for Orphan Medicinal Products (COMP) at the EMA, served 9 years, two elected mandate as Vice-Chair for 6 years.

Yann holds an MBA from HEC Paris. He has three daughters, the eldest of whom is living with cystic fibrosis.

Luis Varona, Born and bred in Bilbao, Spain. Medical degree at Basque Country University. Neurologist trained in Hospital Universitario Cruces, University of Edinburgh and Columbia University, NYC.

Interested in care of the ALS community since 1996.

Participant in clinical trials , lectures and meetings to help improve the quality of life and search a cure for ALS.  Fields of expertise include expedited clinical diagnosis, ethical issues and palliative care, including end of life and bereavement.

Coordinador of the ENCALS certified ALS Clinic at Hospital Universitario Basurto in Bilbao since 2014.

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

Anne-Sophie Lapointe has a thesis and a master's degree in health ethics. She worked as a project manager for the rare disease health network AnDDI-Rares and was able to build with Orphanet the axis 4 of the national plan for rare diseases 3 (PNMR3) dealing with information, training and e-health. Since October 2018, having put an end to her associative mandates, she joined the Ministry of Health as project manager for the rare diseases mission. Within this mission, she is now in charge of steering and coordinating the actions resulting from the PNMR3 launched on July 4, 2018. In this capacity, she sits on the European Commission's board of Member States for the European reference networks for rare diseases.

In 2022, Anne-Sophie Lapointe was involved in the high-level conference of the French Presidency in the rare diseases field. The objective is to build a holistic approach, based on the person’s needs through improved access to high quality, integrated medical and social care. The onset of COVID-19 has exaggerated inequalities for people with pre-existing conditions and vulnerabilities in every aspect of their lives. It underlines the importance of pulling together resources, expertise and efforts at the EU level to fight common challenges.

Anne-Sophie Lapointe believes in a cross-border and cross-sector approach to rare diseases by bringing together numerous actions and initiatives at both national and European level with all the stakeholders.

Professor Milan Macek Jr. MD, DSc is the chairman of the largest academic medical / molecular genetics institution in the Czech Republic – Department of Biology and Medical Genetics of Charles University Prague-2^nd School of Medicine and Motol University Hospital, and of the National Coordination Centre for Rare Diseases (www.nkcvo.cz; NKCVO) responsible for implementation of the ten year national strategy on rare diseases and resulting three national action plans. In addition, he is chairing the national Rare Disease Taskforce at the Ministry of Health. In this capacity his institute has been serving as a "clearing centre" for the dissemination of knowledge gathered within various international projects on rare disease-related research and diagnostics (e.g. EuroGentest.org, RD-Connect.eu, Solve-RD.eu, Norway Grants) to partners in Eastern Europe, Transcaucasia and the Middle East. In this capacity Prof. Macek is also the Czech National coordinator of Orpha.net. In his capacity as chairman of NKCVO he assured that since 2017 Czechia is ranking first within EU13 in terms of participation in European Reference Networks (ERN) for rare diseases.

Prof. Macek is also the past President of the European Society of Human Genetics (www.eshg,org; 2010-2011 ESHG), currently serves at the ESHG liaison for European National Human Genetics Societies (https://www.eshg.org/76.0.html). Under his leadership medical genetics was recognized as an official EU specialty in the Professional Qualifications Directive in 2011. He also closely collaborated with the Council of Europe on the ratification of the Additional protocol on genetic testing for health purposes to the Oviedo convention (2019). He had also been the past-board member of the European Cystic Fibrosis Society (ECFS.eu; 2007-2014) and is the current member of the European Cystic Fibrosis Registry board (https://www.ecfs.eu/ecfspr), whereby he published seminal papers on the disparities in  cystic fibrosis care between the “New” and “old” EU Member States. Moreover, he had also been the board member of the European Society of Human Reproduction and Embryology (www.eshre.eu; ESHRE) where he was responsible for three joint position statements of ESHG and ESHRE in the field of reproductive genetics as their senior author. Prof. Macek served at the European Commission Expert Group on Rare Diseases (formerly www.eucerd.eu) and is currently involved in the European Board of Member States for European Reference Networks for Rare Diseases (https://ec.europa.eu/health/ern_en), including the newly formed EU Advisory Board on ERN sustainability. He had also been member of the Diagnostic Committee of the International Rare Disease Consortium (www.irdirc.org). Prof. Macek is currently the president of the Czech Society of Medical Genetics and Genomics (www.slg.cz). Finally, he was the chief government advisor of the CZ EU Council presidency under which the EU Council recommendation on a field of action in rare diseases was been adopted in 2009.

Prof. Macek did his postdoctoral studies at the Department of Medical and Human Genetics at Humboldt University Berlin (1989-1992) followed by McKusick-Nathans Centre for Genetic Medicine, Johns Hopkins University in Baltimore (1992-1996). In 1992 he was also a fellow at Harvard School of Medicine in the field of non-invasive prenatal diagnosis of rare diseases.

His main research and clinical interests are in the field of molecular genomics of rare diseases, including their deep phenotyping, and in ways on how to bring genomics knowledge to the bedside via targeted therapies with orphan medicinal products. He has also been involved in health economics “cost of illness” studies in this regard. His citation index is over 14,000x with H –index of 43.

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. 

Donata Meroni is Head of the Unit ‘Health monitoring and cooperation, Health networks’, in the Public Health Directorate of DG SANTE, European Commission. She was previously Head of the Unit in the same Directorate 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, when she joined DG SANCO to work at the Food and Veterinary Office in Ireland.

In 2006, she moved to Public Health Directorate in Luxembourg, working as deputy head of the 'Health Programme' Unit dealing with the second and third Health Programmes and health communication issues. She managed the 'Ex-smokers are unstoppable' anti-tobacco campaign, the five editions of the EU Health Prize for journalists, the Public Health website, the Health Portal and the Health EU newsletter.

From 2013 to 2017 she has worked as deputy head of 'Country Knowledge and Scientific Committees' Unit managing the Secretariat of the Scientific Committees on Health, Environmental and emerging risks (SCHEER) and on Consumers Safety (SCCS) and dealing with the Electromagnetic fields dossier. 

In 2017, she was appointed head of Unit in Chafea, in charge of the implementation of the Third Health Programme and the Better Training for Safer Food Initiative.

She is chartered agronomist and had worked in Italy for 13 years, in both private and public sector before joining the Commission.

Till Voigtländer is associate professor of neurobiology and neurosciences at the Department of Neurology, Division of Neuropathology and Neurochemistry, Medical University of Vienna. After studying medicine in Heidelberg, Germany, he received his professional training in molecular biology, neuropathology, neurochemistry and neuroimmunology at different universities and institutions in Heidelberg, Berlin, Zurich, and Vienna. Since his board certification as specialist in neurobiology in 2006, he leads a specialised clinical laboratory focussing on the diagnosis of selected rare neurometabolic, neuroimmunological and neurodegenerative diseases. Besides his diagnostic responsibilities, he is actively involved in past and recent developments in the area of rare diseases on a national, as well as European level. In Austria, Dr. Voigtländer is country coordinator of Orphanet since 2004, was head of the National Coordination Centre for Rare Diseases at the Austrian Healthcare Institute (2011-2018) and is now the director of the national office for rare diseases (since 2019). He was one of the key participants in the elaboration of the national plan of action for rare diseases (2015) and is currently actively involved in its ongoing implementation. At the European level, Dr. Voigtländer was part of several former European expert groups and committees and has served three times as co-chair of the Board of Member States for European Reference Networks. Most recently, he was appointed by all Member States as future coordinator of the intended Joint Action JARDIN for the Integration of ERNs into national healthcare systems. In 2019, Dr. Voigtländer received the EURORDIS Black Pearl European Rare Disease Leadership Award.

Dr Cesar Hernández García is Director General of Common Portfolio of the NHS and Pharmacy at the Spanish Ministry of Health since 2022. Formerly, he was Head of Department of Medicines for Human Use at the Spanish Agency for Medicines and Medical Devices from 2009 to 2022. Rheumatologist by training, worked at the Hospital Clínico San Carlos (Madrid) since 1989 to 2009, being deputy medical director between 2002 and 2005.

Holm Graessner has graduated in Biomedical Engineering, 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. www.zse-tuebingen.de He is Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND). www.ern-rnd.eu. Together with Olaf Riess, he coordinates the H2020 Solve-RD project on “Solving the unsolved rare diseases”. www.solve-rd.eu

Since 2020, as a fellow of the European Academy of Neurology (EAN) he is a member of the management teams of the Neurogenetics Panel and the Rare Neurological Disease Coordinating Panel of the EAN. In 2021, he co-founded the 1 Mutation 1 Medicine (1M1M) initiative which develops mutation-specific antisense oligonucleotide (ASO) therapies for patients with severely debilitating or life-threatening (SDLT) rare neurological diseases. He received the prestigious Black Pearl EURORDIS Leadership award in 2023.

Javier Cobas Gamallo - Physician, specilist in Family Medicine, dedicated to hospital management for 31 years, currently deputy managing director of de Hospital La Paz University, responsasible for fhe strategy área and Coordinator of the CSUR and ERN

Sára Felszeghi is University professor, specialist and inspector in Occupational Medicine, leading the Healthcare and Methodology Centre of the University of Miskolc, awarded Best practice in Occupational Healthcare by European Network for Workplace Health Promotion. Member of the European Economic and Social Committee, deputy of the Workers' Interest Group of the ACSH and member of the Management Board of EU-OSHA. Licensed EOQ MNB Quality System Manager and Quality Manager in Healthcare.

Actively involved with several ETUC, ETUI and EU-OSHA projects, member of the European Association of Schools in Occupational Medicine. Health professional leader of 11 modules of the project GINOP-5.3.4-16-2017 "Health and safety at work" Knowledge provider in the CEI KEP/ Ref: No. 304.4.22-20 project "Improving Occupational Health and Safety System in Republic of Moldova". Member of the organizing committees of numerous international and National conferences, congresses, member of the Editorial Board of more international journals in her speciality, and author of over 400 publications, books, research papers, and invited lectures.

Major honours:

Imre Tóth Memorial Medal - Hungarian Scientific Society of Occupational Health (2007)
Pro Urbe Award - City of Miskolc (2014)
László Batthyány-Strattmann Award - Ministry of Human Capacities of Hungary (2016).
Benkő Sámuel Award of the City of Miskolc in 2020.
Honourable Scientific Award of MAB, Miskolc Academic Committee in 2021.
Knights’Cross of the Hungarian Order of Merit awarded in 2022.

Marta Mosca is Professor of Rheumatology at the University of Pisa and Head of the Rheumatology Unit at the Azienda Ospedaliera Universitaria Pisana, Italy. At the University of Pisa, prof Mosca is also the Director of Fellowship Training Program in Rheumatology.

Since 2017 she is the Coordinator of the European Reference Network on “Rare and Hereditary Connective and Musculoskeletal Diseases” (RECONNET) promoted by the European Commission.

She is also the coordinator of the European Commission Program INTEGRATE, which aims at integrating the physician and the patients’ point of view in SLE. Professor Mosca is a member of the Scientific Advisory Board of LUPUS EUROPE.

Since November 2019 she is member of the Systemic Lupus Erythematosus International Collaborating Clinics Group.

Professor Mosca has participated in the development of EULAR recommendations for the management of SLE, for women’s health, for the management of antiphospholipid syndrome in adults and has coordinated the Development of recommendations for monitoring SLE patients in in clinical practice and in observational studies. She was a member of the EULAR-ACR steering committee for the development of Classification Criteria for SLE; at the present, she is a member of the DORIS group for the development of a definition of remission in SLE.

Professor Mosca has published more than 300 papers, with an H index of 66 and 18745 citations.

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 (www.metab.ern-net.eu) 

Hace más de 8 años Juan Carrión Tudela comenzaba su etapa como presidente de FEDER con fuerza, ilusión y un objetivo: liderar una federación que escuchara y centrara su actividad en las personas y familias con enfermedades poco frecuentes.

Desde su creación, en 1999, FEDER con la implicación del Presidente, se ha convertido en una institución con gran peso social y político, que representa a millones de personas con una característica en común: su relación con las enfermedades raras.

En este tiempo, el movimiento asociativo de FEDER ha mejorado la visibilidad de estas enfermedades además de conseguir apoyar diversas líneas de investigación y convertirse en un intermediario entre las familias y la Administración Pública.

Actualmente es el presidente de FEDER y su Fundación, que agrupa a más de 400 organizaciones de pacientes y coordina a un equipo de casi 50 personas que trabajan para desarrollar proyectos especializados destinados a mejorar la calidad de vida de las personas que conviven con una enfermedad poco frecuente.

Asimismo desde 2013 es presidente de ALIBER, Alianza Iberoamericana de Enfermedades Raras, una red de 19 organizaciones de pacientes con enfermedades raras, presente en 11 países de Iberoamérica, que coordina acciones para fortalecer el movimiento asociativo, dar visibilidad a las EERR y representar a los personas con enfermedades poco frecuentes de Iberoamérica.

Su experiencia con el movimiento asociativo va más allá pues actualmente también es Presidente de la asociación de enfermedades raras D’Genes. desde 2014.

Alberto M. Pereira (Uruguay, 23 nov 1966) is professor of medicine and head of the Department of Endocrinology and Metabolism at the Amsterdam University Medical Centers. He was president of the European Neuroendocrine Association (2016-2018), and since 2017 he is the coordinator of the European Reference Network on Rare Endocrine Conditions (Endo-ERN). He is also PI of the Horizon2020 ERICA project, that aims to strengthen the ERN’s research and innovation capacity. His clinical and translational research focusses on the long-term effects of hypothalamic and pituitary diseases, and in specific on the effects of stress hormones on the brain. He is the recipient of the prestigious 2022 ESE Clinical Endocrinology Trust Award.

Leire Solís is Senior Manager for Health Policy and Advocacy at the International Patient Organisation for Primary Immunodeficiencies (IPOPI) since 2014. In this capacity, she is involved in advocacy programmes at international, European and national level to ensure that the patient’s voice is heard. As part of her responsibilities, she follows closely the health policy environment affecting the PID community globally and support IPOPI’s national patient groups in their advocacy efforts and through capacity building programmes.
Leire is IPOPI’s alternate member to European Medicines Agency Patient and Consumer Working Party (PCWP) and a member at the Rare Disease International Advocacy Committee.
Leire holds a bachelor’s degree in Sociology, a Master’s in International Affairs and is a EUPATI Fellow on medicines research and development.

Simone Boselli joined EURORDIS in April 2017 as a Public Affairs Director. A member of the European and International Advocacy team, Simone contributes to European policy developments and specifically represents EURORDIS in policy discussions on research, development and access to therapies, with a focus on reducing delays and inequalities, on the underlying challenges in the field of the value assessment, pricing and reimbursement of orphan medicines, and on current initiatives towards improved access. He has contributed to the finalisation of the paper on ‘Breaking the Access Deadlock to Leave No One Behind’ and is engaged in finding new policy solutions for improving access to innovative therapies for people with rare diseases.

Simone has over fifteen years of experience in the European public policy scene, having previously worked for two leading consultancies in Brussels and specialised in health advocacy and government affairs in particular. He has in-depth expertise in healthcare having devised and implemented advocacy campaigns at the EU and national levels on a range of global health issues from sustainable health systems, chronic diseases, and healthy ageing to mental health, neurodegenerative diseases, malaria, TB and hepatitis C.

Simone graduated in Sciences of Communications at the University of Bologna,  and he speaks Italian, English and French, with a working knowledge of Spanish.

Irene Norstedt works at the European Commission where she is the Director responsible for the People Directorate within the DG for Research and Innovation.

The People Directorate  works towards the development of a healthy, safe, more equal, free, open and fair society, where the voice of the citizen and different communities are better heard.

Irene has been at the European Commission since 1996, and has worked on various aspects of research in life sciences and particular health research throughout her career in the Commission. Areas of particular interest have been the set up of the public private partnership the Innovative Medicines Initiative (IMI) and the International Rare Diseases Research Consortium (IRDiRC),

Prior to joining the European Commission, she worked for the Swedish life science company Biacore AB and at the Swedish embassy in London.

Irene studied at the Royal Institute of Technology in Stockholm and University of Sussex, and holds a Master of Science (MsC) in Chemical Engineering.

Carmen Laplaza Santos works for the European Commission where she is currently the Head of the Health Innovations and Ecosystems Unit within the Directorate-General for Research and Innovation, prior to this she was the Deputy Head of the Innovative and Personalised Medicine Unit within the same Directorate-General.
Carmen has also worked for the Directorate-General for Communications Networks, Content and Technology where she was Deputy Head of the E-Health, Wellbeing and Ageing Unit and she was also responsible for the budget sector dealing mainly with the financial implementation of the Seventh Framework Programme (FP7) and the Horizon 2020 research framework programmes.
Before joining the European Commission in 2008 she held senior roles in financial and strategic departments of different sectors, such as retail, advertising and banking. Carmen studied at the University of Navarra, Spain and in 1994 she obtained a degree in economics.

Prof Angel Carracedo (University of Santiago de Compostela) is Director of the Galician Foundation of Genomic Medicine (Galician Service of Health), Director of the Genomics and System Biology Group (CIMUS and IDIS), Director of Translational Medicine group and member board of CIBERER. President of Kaertor and INGADA Foundations. Former director of the Institute of Forensic Sciences- University of Santiago de Compostela. Most of AC recent research is now mainly concentrated in the genetics of mendelian and complex traits and personalized medicine and he is coordinating the IMPACT-Genomics project and the Spanish mirror group of the 1+M Genome Initiative and he has participated in more than 20 EU international projects (being PI of 8 of them). AC has published 8 books and over 900 papers (HI 106, and more than 5000 cites per year actually). Former president of different scientific societies on Cancer, Pharmacogenomics and Forensic Science. Current president of the International Academy of Legal Medicine. Past-president of the ISFG and MAFS. Member of the Forensic advisory board of the ICRC and the International Criminal Court. He has obtained a number of awards and distinctions such as Jaime I Award, Adelaide Medal, Galien Medal,  National Award on Genetics, Medal of Galicia, among others.  Doctor Honoris Causa for 8 Universities in Europe and the Americas.

Catedrático de Medicina Legal de la Universidad de Santiago (USC). Director de la Fundación Pública Galega de Medicina Xenómica (SERGAS-Xunta de Galicia). Director del Centro Nacional de Genotipado y de la infraestructura IMPaCT-Genómica (ISCIII). Jefe de grupo de CIMUS, IDIS y CIBERER.
Presidente de la Fundación Kaertor (para búsqueda precoz de fármacos), Presidente de la Fundación INGADA (sobre atención y estudio del TDAH y trastornos asociados), entre otras. Ha publicado 8 libros y más de 800 artículos en revistas internacionales. Premios: Rey Jaime I de investigación, Adelaide Medal, Galien Medal, Medalla de Oro de Galicia, entre otros muchos. Doctor Honoris Causa por varias universidades de Europa y América.

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.

Ana Rath, President of Orphanet, INSERM, is a medical doctor with a background in general surgery and a Masters degree in Philosophy. She oriented her career to medical information and terminologies in 1997 and joined Orphanet (www.orpha.net) in 2005, where she was Manager of the Orphanet Encyclopaedia, then Scientific Director, and Director of Orphanet and Coordinator of the Orphanet network since 2014. Ana was the coordinator of RD-ACTION, the EU Joint Action for rare diseases (2015-2018) and of the IRDiRC’s Scientific secretariat until 2017. She chairs the Orphanet Rare Disease Ontology (ORDO), and was member of the WHO’s ICD11 Revision Steering Committee. She coordinates projects  on implementation of RD codification in EU member states (RD-CODE, OD4RD) and co-chairs the EJP RD Pillar 2 on data and resources ecosystem for RD research in Europe.

Juan Fernando Muñoz Montalvo - Secretary-General for Digital Health, Information and Innovation, Spanish Ministry of Health / Secretario General de Salud Digital, Información e Innovación del Sistema Nacional de Salud 

Funciones:
La Secretaría General de Salud Digital, Información e Innovación del Sistema Nacional de Salud es el órgano directivo del Departamento al que corresponde abordar los proyectos de modernización, innovación, mejora y transformación del Sistema Nacional de Salud a la luz de los nuevos retos derivados de la pandemia por COVID-19, en particular los relacionados con la salud digital y los sistemas de información. Asimismo, le corresponde la realización de actividades tendentes a la traslación de la innovación y avances de la investigación al Sistema Nacional de Salud, sin perjuicio de las competencias atribuidas al Ministerio de Ciencia e Innovación y a las Comunidades Autónomas.
Le corresponde, igualmente, la elaboración de los sistemas de información, la gestión de la información y la identificación de la población protegida y el acceso a la información clínica y terapéutica.
Igualmente le compete el control de la información sanitaria, en el ámbito de las competencias del Departamento.
Formación académica:
Licenciado en Informática (Universidad Politécnica de Madrid) 1992.
Master en Dirección de Sistemas y Tecnologías de la Información y las Comunicaciones (Ingeniería del Conocimiento). Universidad Politécnica de Madrid. 1998.
Programa de Alta Dirección (PAD): Políticas Públicas. Instituto Nacional de Administración Pública.
Pertenece al Cuerpo Superior de Sistemas y Tecnologías de la Información de la Administración General del Estado.
Experiencia Profesional:
Director General de Salud Digital y Sistemas de Información para el Sistema Nacional de Salud desde agosto de 2020 hasta 31 de agosto del 2021.
Subdirector General de Tecnologías de la información del Ministerio de Sanidad desde 2011 hasta agosto del 2020.
Subdirector General Adjunto de Tecnologías de la Información del Ministerio de Sanidad de 2002-2011.
Ha desempeñado diversos puestos relacionados con las tecnologías de la información y las comunicaciones en el Ministerio de Defensa, Agencia Española de Protección de Datos y Ministerio de Administraciones Públicas.
Reseña personal:
Nacido en Madrid.

Emilio Sola Ballojera is the Departmental Policy Advisor at the Department of Equality, Justice and Social Policies of the Basque Government.

Born in Bilbao in 1959, he has a degree in Medicine and General Surgery from the University of the Basque Country and in 2014 he completed the Management Skills Development Program of the Basque Government.

At the beginning of his career, he worked as a mental health and drug addiction doctor in Osakidetza and since 2013 he has held different positions in the field of social policies both in the Basque Government and in the Araba Provincial Council. Specifically, between 2015 and 2019 he was Director of Social Services of the Department of Employment and Social Policies of the Basque Government and currently he is the Departmental Policy Advisor in the same department. He also participated in the development of the Euskadi Health Plan 2013-2020 as well as in the gerontological plans of Euskadi.

He was also Professor/Collaborator in various Masters and University Expert and Advisor on social policies for governmental bodies at international level.

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).

Pierre Jean Coulon - After studying economics and journalism, and working for a local French newspaper, Mr Coulon joined a major international energy (electricity and gas) firm, where he rose through the ranks to become a senior international executive.

Alongside his career, Mr Coulon was very social engaged through his trade union work, heading the regional branch of the French Confederation of Christian Workers (CFTC), and later becoming president of the Energy Federation and special adviser for European and International Affairs at the CFTC.

Mr Coulon has been active in various bodies: as chair of the Family Allowance Office, a member of the employment tribunal (Conseil de Prud'hommes), member of the Economic and Social Council of his region, as well as chair of the regional Red Cross, where he worked with Michel Barnier, president of the Albertville Olympic Games, in 1992. He was also Member in the United Nations Sustainable Development  Commission  between 2004-2010. Mr Coulon also served as deputy secretary on the European Works Councils (EWCs) of his firm.

His interest in energy and his social activism led to him co-found the NGO Right to Energy SOS Future, of which he later became president. Embracing some 250 organisations located in almost 60 countries, the organisation collaborates closely with the UN, where Mr Coulon was a member of the Commission for Sustainable Development for six years and took part in many summits and COPs, including the ones in Johannesburg, Rio, Copenhagen, Marrakesh and, of course, Paris in 2015.

During this period he set up the Order of International Experts (OMEI), based in Geneva, of which he is currently vice-president with responsibility for Europe.

Mr Coulon joined the European Economic and Social Committee in 2010 (after two years as an alternate), where he is a member of the TEN section (bureau member, vice-president, then president from 2015 to 2020) and the REX section (with a particular interest in the Western Balkans). He has been rapporteur for almost 30 opinions, including the opinion on energy poverty in 2012, which marked the Committee's first recognition of energy poverty as an important issue.

Silvia Calzón Fernández - Prior to her responsibility as Secretary of State for Health, she has developed a career focused in epidemiology and public health.

Her research work is mainly linked to the study of social inequalities in health.

As specialist in Preventive Medicine and Public Health, Mrs. Calzón worked as a Primary Care Epidemiologist in the Andalusian Health Service.

PhD in Economics (University of Granada); she also holds a Master's Degree in Public Health and Health Management, in Health Economics and Medicine (Universitat Pompeu Fabra); and a Specialization Diploma in Gender and Health (University of Granada-Andalusian School of Public Health).

In terms of health management, Mrs. Calzón has lead the Areas of South of Cordoba and South of Seville of the Andalusian Health Service.