Virtual Policy Event: Unlocking innovation and access for rare disease patients in Europe

Stella Kyriakides has been commissioner for health and food safety since December 1, 2019. Prior to that, she was elected to the House of Representatives of the Republic of Cyprus in 2006 in 2011 and 2016 representing the Democratic Rally Party, of which she was the vice-president. She was also the chair of the committee on human rights and equal opportunities for men and women. Previously, she served as president of the Parliamentary Assembly of the Council of Europe (PACE), after being appointed head of the Cyprus Delegation to the PACE in 2012. At PACE, Kyriakides was also rapporteur of the first report on the optimal care of patients with breast cancer in the Council of Europe, and was the founder of the first breast cancer awareness campaign at the Council of Europe, which is now held yearly. A passionate advocate of cancer patient rights, she was a founding member of the first breast cancer advocacy organisation in Cyprus, Europa Donna Cyprus, where she served as president from 2000 to 2015. She was also president of the European Breast Cancer Coalition Europa Donna between 2004 and 2006. Kyriakides worked as a clinical psychologist in the mental health services of the Ministry of Health of the Republic of Cyprus from 1979 to 2006. She holds degrees in psychology from Reading University and Manchester University in the United Kingdom.

MEMBER OF THE EUROPEAN PEOPLE'S PARTY, EUROPEAN PARLIAMENT

Member of the European Parliament since July 2019

Speaker of the PP in the European Parliament

President of the Committee on Petitions of the European Parliament

Member of the Committee on the Environment, Health and Food Safety.

Deputy for Barcelona in the Congress of the IX, X, XI and XII legislatures.

Councilor and Spokesman of the PP Group in the City Hall of Sant Sadurní d ‘Anoia from 2003-2015.

Third Vice President of the Bureau of the Congress of Deputies in the X Legislature.

Minister of Health, Social Services and Equality from 04/11/2016 to 06/06/2018

She attended the COU in the United States (Memphis, Tennessee).

She studied basic knowledge of German at the Universität Freiburg (Germany). Law degree from the Abad Oliba CEU University (Barcelona).

She completed the last year of Law Degree at the Università degli Studi di Ferrara (Italy) with the ERASMUS program.

Master of the Legal Practice School of the Barcelona Bar Association.

Practicing Lawyer from 1997 to 2011, specialized in civil, property and family law.

She also served as a Lawyer from 1997 to 2004.

Community Agricultural Law Program taught by the Università degli Studi di Ferrara (Italy).

Postgraduate in Urban and Real Estate Law taught by Pompeu Fabra University.

Postgraduate in Family Mediation and contractual negotiation taught by the University of Barcelona.

Real estate and urban law program taught by ESADE.

Real Estate Business Management Program taught by IESE.

She has been President of the Young Confraria del Cava of Sant Sadurní d ‘Anoia.

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.

During his studies, in 2004, Tomislav Sokol became a Member of the Croatian Democratic Union (HDZ). He climbed the party ranks during the next decade, always emphasising on Christian Democratic values as the cornerstone of its identity. He was an Assistant Minister in the Ministry of Science and Education, 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 a Member of the Committee on the Internal Market and Consumer Protection and a Substitute Member of the Committee on Regional Development.

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, worked on different research projects and is currently taking part in a Jean Monnet project related to EU health law and policy. Previously, he worked in a legal practice and is currently 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. He is married to Ana since 2018.

MEP since 2019.

Stelios Kympouropoulos was born on 9 July 1984 in Athens, Greece. He is a psychiatrist, a politician and a social activist. He has been a Member of the European Parliament and a Member of the Group of the European People's Party since 2019.

He is a Member of the Committee on Employment and Social Affairs, the Delegation for relations with the Mashreq countries and the Delegation to the Parliamentary Assembly of the Union for the Mediterranean. In addition, he is a Substitute Member of the Committee on Regional Development and of the Subcommittee on Human Rights. He is also a Member of the Disability Intergroup of the European Parliament.

He is also a Member and co-Founder of the Independent Living Organisation of Greece - i-living, the first organisation that promotes independent living in Greece.

MEP since 2019.

Born on January 2, 1963 in Los Angeles, USA; Roman Catholic; married; two children.

Ullmann spent his childhood in Los Angeles until he moved back to Germany with his family in 1972. After graduating from high school in 1981 at Reichenbach-Gymnasium in Ennepetal, he studied human medicine at Ruhr University Bochum and graduated in 1987 with the medical state examination. During his time as an assistant doctor at the University Clinic at St. Josef Hospital in Bochum, he took part in clinical training at St Clare's Hospital / Spellman Center in New York City in the area of HIV / AIDS. Since 1995 he has worked at the Mainz University Clinic. He was trained as an infectologist at Harvard Medical School from 1996-1998. He completed his habilitation in 2008 at the Mainz University Medical Center and in 2012 was appointed professor at the Würzburg University Hospital.

Ullmann joined the FDP in 2003 and was a board member of the FDP district association Mainz-Bingen from 2003 to 2012. During this time he supported the establishment of the FDP local association Ober-Olm and became its local chairman. From 2004 to 2012 Ullmann was a member of the municipality council of Ober-Olm and from 2009 to 2011 a member of the Nieder-Olm municipal council. He was also a member of the Mainz-Bingen district association. Since 2013 he has been a member of the State Expert Committee on Science and Culture (Bavaria), the State Expert Committee on Health (Bavaria) and the Federal Expert Committee on Health of the FDP. Ullmann was deputy chairman of the FDP Würzburg-Stadt from 2013 to 2015 and has been its chairman since 2015.

Ullmann is section spokesman for infectious diseases at the BDI (Professional Association of German Internists) and assessor in the working group for infections in hematology and oncology of the DGHO. Since 2015 he has also been Liaison Lecturer at the Friedrich Naumann Foundation for Freedom.

Johanna Friedl-Naderer is President, Europe, Canada & Partner Markets. She has served on the Global Extended Leadership Team since 2014. Ms. Friedl-Naderer brings more than 20 years of experience in the pharmaceutical industry. Having joined Biogen in 2001, she has served across a wide range of functions including Sales & Marketing, national and international General Management, Alliance Management and Corporate Development in both primary and specialty care. In addition to her roles at Biogen, Ms. Friedl-Naderer is an active member of the Swiss-American Chamber of Commerce, Swiss Interpharma, European Federation of Pharmaceutical Industries and Associations and the council of the International Federation of Pharmaceutical Manufacturers and Associations.

Yann 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 of Children with Rare Diseases 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.

Dr. Bertalan Meskó, PhD is The Medical Futurist and the Director of The Medical Futurist Institute analyzing how science fiction technologies can become a reality in medicine and healthcare. As a geek physician with a PhD in genomics, he is also an Amazon Top 100 author. He is also a Private Professor at Semmelweis Medical School, Budapest, Hungary.

With 500+ presentations including courses at Harvard, Stanford and Yale Universities, Singularity University's Futuremed course at NASA Ames campus and organizations including the 10 biggest pharmaceutical companies, he is one of the top voices globally on healthcare technology.

Dr. Meskó was featured by dozens of top publications, including CNN, the World Health Organization, National Geographic, Forbes, TIME magazine, BBC, and the New York Times. He publishes his analyses regularly on medicalfuturist.com.

Nathalie Moll joined the European Federation of Pharmaceutical Industries and Associations (EFPIA) as Director General in April 2017.

EFPIA represents the pharmaceutical industry operating in Europe. Together with its direct membership 40 leading pharmaceutical companies, 33 national associations representing over 1,900 companies and in collaboration with health and research players, EFPIA's mission is to create an environment that enables our members to innovate, discover, develop and deliver new therapies and vaccines for people across Europe, as well as contribute to the European economy.

Prior to joining EFPIA, between 2010 and 2017 Nathalie was the Secretary General of EuropaBio ranked as the most effective European Trade Association in Brussels in 2013. She spent over 20 years working for the biotech industry at EU and national level in associations and corporate positions and held the position of Chair and Vice Chair of the International Council of Biotech Associations (ICBA).

In 2013, Nathalie won the Technovisionaries Women Innovation Award organised by Women & Technologies® while in 2009, Nathalie and the Green Biotech Team of EuropaBio were presented with the Leadership and Excellence in Advancing Ag-Biotech and Food Issues Award. Nathalie was also named one of the 15 leading women in biotech in Europe in 2017.

Nathalie holds an Honours Degree in Biochemistry and Biotechnology from St Andrews University, Scotland.

Jana Popova is PhD student and freelance journalist. In 2016, she started her PhD program at Sofia University in the field of media and digital communications. She is author on different articles about social policies, health system, education and different aspects of the daily life of people with neuromuscular disorders for Bulgarian websites. Her personal interests are in the field of media development and digital communications.

As a patient with neuromuscular disorder, she is active member of the Bulgarian Association for Neuromuscular Diseases. She is involved in different activities, organized by the Bulgarian Association for Neuromuscular Diseases and supports all Bulgarian patients’ organizations for neuromuscular disorders.

In October 2017, she became a member of the EAMDA Executive Committee. She believes that her position as EAMDA EC member is great honor and incredible opportunity to develop the cooperation between different European patients’ organizations for neuromuscular disorders.

At the beginning of 2018 she became a member of the EPF Youth Group – it consists of young patients’ representatives with different chronic conditions. Jana believes that her position as a member of the EPF Youth Group is big honor and it will help to increase the awareness about neuromuscular disorders and young patients’ needs. She thinks this is great opportunity to enhance the cooperation between European organizations and to pay more attention on the problems of people with NMD. Jana is also a member of different working groups in the field of equal access to healthcare, drug information and transparency and patient engagement in translational research. Currently she is representative of the EPF Youth Group in the EPF Board.

Jana is also a recipient of the EURORDIS Black Pearl Award for Young Patient Advocate in 2020.

Avril Daly is CEO of the patient-led global umbrella organisation, Retina International, which represents the voice of charities and foundations concerned with the promotion of retina research and related health policy in 43 countries.

Avril has worked in health policy for rare and common eye disease since 2000 and was CEO of the Irish NGO, Fighting Blindness for eight years. She was Chairperson of Rare Disease Ireland from 2006-2019. In 2009 she was elected to the Board of Directors of Rare Disease Europe – EURORDIS, and has been the organisations Vice-President since 2012.

In 2011 Avril was appointed by the Irish Minister for Health to a steering committee working towards the development of the Irish National Plan for Rare Diseases. The plan was published in 2014. She was appointed to the Irish Clinical Programme for Rare Diseases at the Health Service Executive (HSE) in Ireland in 2014 and was recently appointed to the Rare Disease Technology Review Committee and the National Centre of Pharmacoeconomics (NCPE) to review orphan therapies that fail initial Health Technologies Assessment (HTA) for statutory reimbursement.

Avril has held board positions with the European Patient Forum, The European Platform for Patient Organisation Science and Industry (EPPOSI), the HRCI (formerly Medical Research Charities Group) in Ireland and IPPOSI, the Irish Platform for Patients Organisation Science and industry. She believes that patients have a critical role to play in aiding the development of appropriate interventions from concept to delivery.

Avril holds a Bachelors Degree in Business and International relations, she is affected by Retinitis Pigmentosa.

Orla Hardiman is one of only two full Professors of Neurology in Ireland. She is Head of the Academic Unit of Neurology at Trinity College Dublin and Consultant Neurologist at Beaumont Hospital, where she is Director of the National Amyotrophic Lateral Sclerosis (ALS ) service. The clinic provides direct clinical care for over 80% of Irish patients with ALS. She is the Director of the Irish ALS/MND Register, which has been in continuous operation since 1995 and is the longest running population based register of ALS/MND in the world.

Hardiman was Academic Director of Trinity Biomedical Sciences Institute from 2015-18, and then took up the role as National Clinical Lead in Neurology for the Health Service Executive in early 2019.

She leads a research group of over 45 individuals in Neurodegeneration, with particular focus on ALS and frontotemporal dementia. Her research group focuses on epidemiology, deep phenotyping, biomarker discovery, imaging and signal analysis and population genetics of ALS, and on early phase clinical trials.

She is Co- Chair of the European Network for Cure of ALS (ENCALS), a senior member of the executive of the TRICALS Consortium and is Editor in Chief of the journal Amyotrophic Lateral Sclerosis and the Frontotemporal Degenerations.

She is the recipient of a number of international awards including the AAN Sheila Essey Award in ALS Research, and the International ALS Alliance Forbes Norris Award. In 2018 she received a TCD Innovation Award for Societal Impact. She is one of a handful of practicing physicians to have been elected as members of scholarly Royal Irish Academy.

She is the author of over 380 peer reviewed research articles and has raised over €14million in research funds. Her research is funded by Science Foundation Ireland, the Health Research Board, The American Centre for Disease Control, The American ALS Association, the British MND Association the Irish MND Association, and the charity Research Motor Neuron.

Sue Saville is a highly-experienced broadcast news journalist & conference host, she was the Medical Correspondent at ITV News for 12 years & now chairs conferences, awards nights, medical symposia & webinars, as well as running Media Training courses for top pharmaceutical & healthcare company executives, plus for other industries.

Sue Saville freelances as a News Reporter for ITV News & makes corporate films for ITN Productions.

Events that Sue has chaired include the Awards Night for Nottingham University Hospitals NHS Trust charity (3 years in a row); the stage events for the opening of Danone Nutricia’s new factory in Cuijk, Netherlands (25.3.2019); the Philips’“The Next MR Wave” Livestream from the Netherlands; the launch of the World Cancer Research Fund’s “Third Expert Report” in London; the EU Whole Grain Roundtable in Brussels; the Philips Live! event at the European Congress of Radiology, Vienna; the Institute of Risk Management Conferences (2017 & 2018); Merck’s Fertility Event, Hamburg; Media Advisory Boards for Abbvie; the European Scientific Working group on Influenza’s Conference, Riga; Bayer’s Media Workshop at the European Society of Cardiology Conference, Barcelona; the Private Health Conference at London’s QE2 Centre; the Diversify Medical Careers Conference; Ramsay Health Care UK Annual Conference; Health Service Journal Commissioning Summit symposium and Teva’s Parkinson’s Disease Symposium at the World Neurology Conference in Geneva, among other events, plus consultancy work for Roche, GSK and Novartis.

Sue hosted the Royal Society of Medicine’s “NHS at 70” podcast series, plus podcasts on Cardiology and Radiology for Philips. Before joining ITN, Sue was the Chief Correspondent at GMTV, after her roles at the BBC as a News Trainee, then Reporter and Presenter at Breakfast News. She worked in radio and television in Hong Kong after graduating from Oxford University and from Cardiff University with a Postgraduate Diploma in Journalism Studies.