Speakers
Anna Arellanesová
Anna Arellanesová is the chairperson of Rare Diseases Czech Republic (2014 -), a Czech patient-led umbrella association for rare diseases. She is also a member of the board and former chairperson of the Czech Cystic Fibrosis Association and board member of Eurordis – Rare Diseases Europe. Being in the role of a vice-chair of the Patient Council of the Ministry of Health, where she represents rare diseases, she was able to participate in the creation of new legislation for an orphan drug reimbursement approval system, one which counts on the active participation of patients as decision makers. She is also a member of the working group for rare diseases at the Czech Ministry of Health. Thanks to a long-term cooperation with experts, she prepared and fulfilled the National Strategy for Rare Diseases as well as National Action Plans for Rare Diseases.
Nicola Bedlington
She is a founding partner of Millwater Partners and is the international lead for health, social policy, and multi-stakeholder engagement. Nicola currently advises global health bodies and is special advisor to the European Patients’ Forum (EPF). From 2006 to spring 2019, she served as Secretary General of EPF, growing the organization from 23 to 74 member organizations and creating a vibrant secretariat in Brussels. Prior to her role within EPF, Nicola ran her own consultancy for several years, during which she undertook several international assignments in the fields of health, disability and ageing.
Jakub Dvořáček
He has been a political Deputy of the Minister of Health since February 2022 in charge of the preparation and management of the Czech presidency to the Council of the EU in the health agenda. Until then he was the Executive Director of the Association of Innovative Pharmaceutical Industry (AIFP) for 11 years. His agenda in AIFP was among others support to patient organizations and speeding-up the process of new drug payment approval. Before that, Jakub worked in the CzechInvest agency on investment support and on a position of the Program Director in Charity CZ.
Karen Facey
Following a career as a statistician in the pharmaceutical industry and medicines regulation, Karen entered the field of Health Technology Assessment (HTA). Karen is passionate about holistic assessment of the impact of interventions in health systems using robust evidence in a variety of forms to inform accountable decision making. This is not just an academic interest, as a Non Executive Director in a Scottish health board for 8 years Karen was also fully aware of the real-life challenges in setting health care priorities when budgets are limited and efficency pressures increase. She also chaired the government committee that created the new funding formula for the NHS (NRAC). She is an engaging presenter and experienced facilitator.
Margareth Galbraith
She is a project manager in the HTA division at the French National Authority for Health (HAS). Currently, she is part of the HAS team working on EUnetHTA 21 as HAS representative to the Committee for Scientific Consistency and Quality (CSCQ) and a member of the hands-on group developing the guidelines and templates for patient and HCP involvement in their processes. Under EUnetHTA Joint Action 3 she managed the daily operations of the EUnetHTA Early Dialogues Secretariat and the inclusion of patients in Early Dialogues.
Radu Ganescu
He is the President of the national Coalition of organisations for patients with chronic conditions of Romania (COPAC), and Vice President of the EPF Board. He is also a founding member of the Romanian Association for People with Thalassaemia, which he is heading since 2005. In 2008, he became a voting member in Thalassaemia International Federation.
Stanimir Hazardzhiev
He is one of the founders and current Chairperson of the Bulgarian National Patients’ Organization (NPO). In 2011 and 2015-2016, he represented the Bulgarian patients in the Supervisory Board of the National Health Insurance Fund. He was a board member of the EPF. In addition, he is one of the initiators of the joint initiative of the EPF and the Bulgarian National Patients’ Organization – the Patient Access Partnership (PACT) –, where Stanimir takes the position of a Secretary-General. He is also a Secretary-General of a newly established organization named CEE4Health. It is a Think Tank group on patient access focusing on the CEE region which brings together patient representatives, health professionals, pharmacoeconomists and all other kind of experts in the field of healthcare.
Robert Hejzák
He is a chairman of the National Association of Patient Organizations (NAPO) and a long term chairman and a board member of the Czech AIDS Help Society representing people living with HIV. In his work for the patient organizations he mainly focuses on advocacy in better access to HIV treatment and prevention, destigmatization of the illness and equal access to healthcare for all patients. Robert was working in the Patient Council of the Minister of Health and the National Coordination Committee for HIV/AIDS. He is a member of the umbrella patient organization European AIDS Treatment Group (EATG) and European Patients' Forum (EPF), he represents the Czech Republic in the European Commission working group titled The EU HIV/AIDS, viral hepatitis and tuberculosis Civil Society Forum. He also represents civil society in the ECDC The European Network for STI Surveillance coordination committee. He is an economist by education and profession and currently focuses on developing a system of sustainable financing of patient organizations and patients‘ involvement in decision-making.
David Kolář
He has been the Executive Director the Association of Innovative Pharmaceutical Industry (AIFP) since February 2022. Previously he spent seven years as the Secretary of AIFP. His role was mainly providing complex law support to AIFP projects and activities during negotiations with the Ministry of Health, health insurance companies, patient organizations and other stakeholders. David also focused on providing law consultations concerning ethical and self-regulatory rules of the innovative pharmaceutical industry, participated in AIFP educational projects and represented the association in interdisciplinary work groups.
Laetitia
She has collaborated, since 1998, with several organizations linked to the deconstruction of prejudices about sexual practices (including commercial sex), sexualities, non-exclusive consensual relationships, sex and gender (experienced and/or perceived), "race", ethnicity and/or nationality. She has been doing it professionally since 2011, participating in activities to support the improvement of the quality of life of sex workers (with different gender practices) and transgender persons. Currently, she also works on the identification and elimination of barriers in the access to health care, namely regarding people without Portuguese nationality, trans people, and sex workers.
Maria Mavris
Maria Mavris first joined EMA as a seconded expert from a patient organisation in 2014 and then as a staff member from 2017. As part of the Public and Stakeholder Engagement department of EMA, her work focuses on involving patients all along the regulatory lifecycle and supporting them in their involvement.
Derick Mitchell
He is the Chief Executive Officer of IPPOSI. Derick has a background in research, strategy and advocacy from over 12 years’ experience spanning a number of leadership roles in research and multi-stakeholder engagement in Ireland and at the EU-level. Derick has a strong track record in collaborating to influence healthcare policy with the goals of enhancing research infrastructure, increasing patient involvement and improving access to treatments. At an international level, he is an elected board member of the European Patients Academy (EUPATI) Foundation. He is a chairperson of the European patient representative round-table of ISPOR and a founding member of the European Patients’ Forum-led DataSavesLives.eu initiative. In Ireland, Derick serves on the advisory boards and steering committees of a number of health-related initiatives.
Edita Müllerová
Since 2014, she has been a chairwoman at the Revma League Czech Republic. Between 2017–2021 she was a member of the Patient Council of the Minister of Health. Edita i sone of the founders of the National Association of Patient Organizations where she holds a position of a Vice Chair. She has been actively dealing with the issue of the position of patients and patient organizations in the Czech health system since 2012. She focuses on education of patients, support and sustainability of patient organizations and coordination of their activities.
Richard Norris
He is a former Director of the Scottish Health Council, based in Glasgow, which was responsible for supporting and assuring the NHS in Scotland in its patient and public involvement activities through a network of 14 local offices. Before that he was the Director of Policy for the Scottish Association for Mental Health, one of Scotland’s largest third sector organizations, and has also been the Chief Executive of a policy think tank based in Edinburgh. He has extensive experience of patient and public involvement, public policy, healthcare policy, and communications. He has a degree in Politics and Government, and has also carried out research as an Honorary Fellow at Edinburgh University. Richard is currently producing training videos for commercial clients as well as engaging in his continuing interest in health policy.
Mariya Petrova
She is a Legal expert and Consultant of the National Patients Organization and the Partnership for Health Council (a permanent consultative body to the Council of Ministers of Bulgaria). Mariya is also the Executive Director of the European Institute of Healthcare Law, Healthcare Management and Public Health in Sofia, Bulgaria, and the founder of the first Medical Law Practice in Bulgaria. A graduated medical doctor with a second degree in Law, she also holds a Master’s degree in Healthcare Management and Public Health. She has worked for and with the Bulgarian Helsinki Committee, the Bulgarian Association for Patient's Defense, the Ombudsman Office of Bulgaria, and UNICEF as an expert, consultant, and lawyer. Her expertise and research are focused on the legal aspects of e-health, patient safety, and medical malpractice, on which she is working toward her Ph.D.
Andrzej Rys
Since 2014, he is the Director responsible for Health Systems, Medical Products and Innovation in DG SANTE, in the European Commission in Brussels, Belgium. From 2011 to 2014, he assumed the position of Director for Health Systems and Products in DG SANCO. In 2006, he became Director for Public Health and Risk Assessment at the Directorate-General for Health and Consumers (DG SANCO), in the European Commission. After becoming Senior Consultant of “Health and Management Ltd” for the World Bank (WHO) and EAR in Serbia in 2002, he founded in 2003 the “Center for Innovation, Technology Transfer and University Development” (CITTRU) at the Jagiellonian University where he assumed the role of Director until 2006. He served as Director of the Krakow’s City Health Department and he continued his career as Deputy Minister of Health in Poland.
Margarida Santos
She is a Social Psychologist, PhD in Psychology, by Iscte - University Institute of Lisbon. Her academic research has focused on public participation in decision-making processes, and this is how she began her activity in the area of health and her specific interest in the involvement of citizens and their representatives in health policy in Portugal. Since 2015 she is in the Coordination of the initiative MORE PARTICIPATION better health, promoted by GAT – Grupo de Activistas em Tratamentos in collaboration with several other health associations and social organizations. MORE PARTICIPATION better health has recently promoted the Charter for Public Participation in Health, a document now enshrined in Law No. 108/2019, of 9 September. Until Mars 2022 she was working as political advisor in the Office of the Secretary of State for Parliamentary Affairs of the XXII Portuguese Constitutional Government. Currently she is teaching in Iscte - University Institute of Lisbon.
Irena Storová
She graduated in pharmacy at the Pharmaceutical Faculty of the Komenský University in Bratislava and had been working in that field for 25 years. During her career, she held several managerial positions in healthcare but she draws knowledge also from her practice in a pharmacy. In 2014, she joined the State Institute for Drug Control (SÚKL) as a deputy director. She mainly focused on coordination of expert agenda in several departments and education programs for patients and patient organizations. The Minister of Health installed Irena Storová as the director of SÚKL in June 2018. She is a member of the Czech Chamber of Pharmacy and the Czech Pharmaceutical Society at the ČLS JEP. She is a member of the Scientific Council od the Pharmaceutical faculty of the Charles University in Hradec Králové.