95 Rare Alliance Greece, EUPATI
· Mary is a graduate of the Department of English Language and Literature of the University of Athens and holds an MA in English Language Teaching. She has worked for more than 20 years as a teacher for the Greek Ministries of Education, Defence and Tourism, teaching English Language and Terminology to adults. She speaks Greek, English and French.
· After the belated diagnosis of a rare syndrome, Williams Syndrome, in her child, she joined the Volunteer Team of the Greek Alliance for Rare Diseases. She then served as the Secretary General of the Board of Directors of PESPA until 2016.
In 2016, she graduated from the European Patients Academy on Therapeutic Innovation (EUPATI). As a Eupati Fellow and a member of the Eupati National Liaison Team of Greece, she advocates for patients’ rights and patients’ active role in the Healthcare system in order to improve Healthcare services, as well as rare patients’ quality of life.
· She has become a member of the ePAG ITHACA of Eurordis, as well as a patient representative in EFGCP/paediatric medicines. She is an elected member of the parents committee at the Special Education School her child attends and volunteers as a member of the committee for people with disabilities in her municipality.
· She is among the founding members of the Patient Organisation << “95” Rare Alliance Greece>> and currently the President of the Board of Directors.
· She has been trained on the programme “Decentralised Patient -Centric Clinical Trials Course” by ECCRT (European Centre for Clinical Research Training) and currently attends the “Eurordis Leadership School”. She is also the Scotwork Advancing Negotiation Skills certificate holder.
TEDDY European Network of Excellence for Paediatric Research
TEDDY Chair, Lawyer specialised in european health law and bioethics and former Professor at Aix-Marseille University, Annagrazia ALTAVILLA is responsible of International Relations of Espace Éthique PACA-Corse (AP-HM/Aix-Marseille University – France). She is consultant/expert of the Council of Europe within the COE Strategic Action Plan (2020-2025).
Former member of the European Medicine Agency (EMA) Paediatric Committee (2008/2011), she is expert/legal advisor of several EU/IMI founded projects and member of the steering committee of the project “IGP Rare” on genetic information in rare diseases founded by the Biomedicine French Agency. She is member of several scientific societies (e.g. WALM, IIREB, GEobs UNESCO), as well as member of the Board of Directors of the European Association of Health Law (EAHL) – France representative.
Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), European Paediatric Translational Research Infrastructure (EPTRI)
Donato Bonifazi is an economist specialised in European Project Management and Chief Executive Officer at CVBF, a non-profit research consortium with 20 years of experience in clinical research.
He has been Trial Leader of two paediatric EU-funded Projects involving more than 20 clinical centers from European and Mediterranean countries, and WP3 Leader within PedCRIN (Paediatric Clinical Research Infrastructure Network), dedicated to the development of tools to facilitate paediatric clinical trials.
Donato Bonifazi is the Coordinator of EPTRI (European Paediatric Translational Research Infrastructure) a new Research Infrastructure aimed at increasing knowledge on human development and ontogeny, as well as their impact on drug effects and toxicity, implementing and providing services on paediatric basic and preclinical research, and accelerating the translation to the clinical phase to grant access to new treatments for the paediatric populations.
EURORDIS Rare Diseases Europe
Virginie holds a PharmD and a PhD in Biological Sciences, she joined EURORDIS in 2014 as Therapeutic Development Director. She is responsible for following the development of medicinal products for rare diseases and for enabling the engagement of patients into the regulatory and development processes. She has served several years as Vice-Chair of the Therapies Scientific Committee of IRDiRC (International Rare Disease Research Consortium).
European Joint Programme on rare diseases (EJPRD)
Assistant director of the Thematic Institute of Genetics, genomic & Bioinformatics of INSERM - Scientific Coordinator of the European Joint Programme on Rare Diseases
Daria Julkowska has over 15 years of experience in research and management. She is the Scientific Coordinator of the European Joint Programme on Rare Diseases that brings together different type of stakeholders (researchers, funders, clinicians & patients) from 35 countries from Europe and beyond, and also is responsible for the coordination of the IRDiRC Scientific Secretariat. This position allows her to implement the strategic rare disease research and funding recommendations of IRDiRC to the development of EJP RD which includes the participation of the European Research networks. She is involved in the rare diseases field since 2010, starting from E-Rare, the ERA-Net for Research programmes on rare diseases, where for the first two years she occupied the position of the project manager to finally (April 2013-December 2018) take over the coordination of the programme. As the coordinator, she developed and put into action a set of collaborations facilitating rare diseases research, including the partnerships with European Research Infrastructures and Patients’ Organizations. She has an extensive knowledge and understanding of European funding schemes and programmes. Dr. Julkowska obtained her international PhD in molecular biology at the University of Paris XI, France and University of Gdansk, Poland in 2005. She pursued her scientific vocation by the post-doctoral experience in cellular biology, at Institut Pasteur, Paris and extensive training in communication and European Union counselling. She also holds MSc in Management of Research from the University of Paris Dauphine. In 2020 she received EURORDIS Back Pearls European Rare Diseases Leadership Award.
ICON, European CRO Federation (EUCROF)
Vice President of Scientific Affairs, Pediatric Subject Matter Expert, ICON.
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 ICON, 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. Dr. Dehlinger-Kremer earned a Doctorate in Sciences from the J. W. Goethe University in Francfort on the Main, Germany; a Degree of Advanced Study in Neurophysiology from the University Louis-Pasteur, Strasbourg, France; and a Master of Sciences degree from University Moulin de la Housse in Reims, France.
ATHENA - Research and Innovation Center in Information, Communication and Knowledge Technologies, European Paediatric Translational Research Infrastructure (EPTRI)
Emmanuel Mikros, Chemist, Ph.D. Professor in Pharmaceutical Chemistry University of Athens. Adjunct member of ATHENA RC. He obtained his Ph.D. in Chemistry from Universite Paris-Sud (Paris XI) in 1988 and then he joined University of Athens. Research Fellow at the Institut für Chemie Medizinische Universität zu Lübeck, (Germany), with Prof. T. Peters in 1996 and at the Laboratoire Ingenierie Moleculaire, INRA, Centre de Recherches de Nantes, (France) with Dr. S. Perez (1993 and 1994). He was awarded the DAAD (Germany, 1996) and Marie Curie (European 1994) fellowships. Invited Irofessor in Institut de Chimie de Nice (December 2013) and University of Vienna (2017). He is author of 155 peer reviewed scientific publications (4500 citations, h-factor 36 scholar). He has participated in over 20 research and educational projects funded by National and EU organisms. He is president of Hellenic Society of Medicinal Chemistry. Invited speaker in more than 45 international and national meetings and universities, he has also participated in the organising committee of 14 international and national scientific congresses. Prof. Mikros leads a research group focused on NMR spectroscopy, NMR based Metabolomics, Structure elucidation of biomolecules, natural products and drugs, as well as Structure Based Drug Design, Molecular Simulations, in silico screening and Structure Activity Relationships.
Duchenne Data Foundation (DDF)
Research Project Manager. Elvina holds a PhD in Medical Genetics and has an extensive experience on the study of muscular dystrophies. During her post-doc training (2012-2014), she was the key researcher for the development of a humanized mouse model for the study of the FSHD pathophysiology (Department of Physiology, University of Maryland, USA). Elvina is responsible for the management of collaborative projects (Internal and EU-funded projects) related to the collection, preparation, sharing and re-use of DMD/BMD data. She also leading sustainability and business development activities through the development of new partnerships and project proposals.
European Reference Network for Hereditary Metabolic Disorders (MetabERN)
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