Eurordis - Rare Disease Europe

Elvina Sakellariou is the Research Coordinator and Project Manager at Duchenne Data Foundation. She implementes operational policies and procedures and manages collaborative projects related to DMD data.

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

Caterina Lucano is the Scientific Team Manager at Orphanet.

Ronald Cornet holds a position as full professor in Medical Informatics, principal investigator and principal educator at the department of Medical Informatics in the Amsterdam Public Health research institute, Amsterdam UMC.

He leads a research group on “reusable health data”, in which research focuses on semantic interoperability, both from a technical perspective and from a users’ point of view, as a key component to establishing FAIR data for healthcare and research.

Dr. Loes van der Zanden is the Staff Scientist IQ Health, at Radboud University Medical Center

Andri Papadopoulou is a Scientific Officer at European Commission for over 25 years.

Anja Schiel has studied Biology at the Johannes Gutenberg-University, Mainz, Germany. She received her PhD from the Free University in Amsterdam in 2006 and worked several years as Post-Doc on a range of subjects focusing on oncology, immunology and molecular biology, first at the University of Leiden and later at the University of Oslo, before starting at the Norwegian Medicines Agency (NoMA) in 2013.

At NoMA she is working as special adviser/Statistician/Methodologist both on regulatory (EMA) and HTA projects. She has been Chair of the Biostatistics Working Party 2017 – 2019 and is currently the Chair of the Scientific Advice Working Party at EMA. In addition, she has been heavily involved in EUnetHTA activities, with focus on parallel EMA-HTA scientific advices as Norway is member in EUnetHTAs Early dialogue working party. This explains her particular interest in use of methodology and statistics in pharmaco-economic evaluations. She is furthermore involved in several IMI projects as member of their Scientific Advisory boards.

Dr. Dehlinger-Kremer’s expertise spans more than 30 years in the research industry, including 29 years of experience in global regulatory affairs, medical affairs, and pediatric leadership. Prior to joining PRA Health Sciences, she served in several executive leadership roles at global CROs, and has experience in global drug development in more than 40 countries. She has contributed hands-on to the global development of numerous products, including medicines for children, drugs for orphan diseases and biosimilars. Her vision and leadership extend to service with a number of professional organizations – she is an observer member of the Coordinating Group of the European Network of Pediatric Research (Enpr-EMA) at the European Medicines Agency, chair of the Pediatric Working Group and also President of the European CRO Federation (EUCROF), serves as chair of the European Forum for Good Clinical Practice (EFGCP) Children Medicines Working Party and Board Member of the association, and is active in the International Children’s Advisory Network (iCAN).

In 2015, Dr. Dehlinger-Kremer was named one of PharmaVOICE’s 100 Most Inspiring People in Life Sciences.

Antonio Marques Atalaia is a Neurologist since 1995, a Clinical Neurophysiologist since 1996 and a Sleep Medicine specialist (Somnologist ESRS), who studied and trained at Hospital Santa Maria/Faculdade de Medicina de Lisboa in Lisbon, Portugal. He had a 10 years Naval Doctor career in the Portuguese Navy and worked afterwards for the British Hospital in Lisbon and the CHCB in Covilhã, Portugal. In 2012 he transferred himself to the University of Newcastle upon Tyne as a Senior Research Associate at the Institute of Human Genetics (currently John Walton Muscular Dystrophy Research Center) and later had jobs as a NHS Neurology Consultant (Newcastle, Sunderland, Southend-on-Sea).

He moved to Paris in April 2019 and initially worked as MRA for Solve-RD and currently works as Clinical Advisor for ERN EURO-NMD.

Sergiu Siminiuc is a software engineer at the Duchenne Data Foundation, working on Backends, building APIs and architecting projects.

Alexandros Nousias is responsible for data strategy, protection and governance at Duchenne Data Foundation, digital ethics and law at BIND project. He is a business and legal consulting in AI ethics, data governance, information technology, scientific research. IEEE Certified Lead AI Ethics Assessor.

Associate Director of Value Access, Health Policy and RWE, IQVIA Hellas

Maria Kalogeropoulou is Associate Director of Value Access, Health Policy and RWE in IQVIA Hellas. She is a graduate of the Nursing department of the National and Kapodistrian University of Athens and has a postgraduate specialization with Master’s in Science of Healthcare Administration. She holds a PhD in the Department of Organization and Business Administration of the Athens University of Economics and Business, while she has been a member of the Contractual Academic Staff at Open University of Athens during the last few years. Her main research interests are the fields of Health Economics and Health Care Units Management, having made over 45 publications in international and Greek scientific journals and conferences.