Programme > Keynote speakers

Dr Holm Graessner 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. In the Coordinator’s Group of the European Reference Networks, he co-leads the joint – ERN coordinators and Board of Member States - working group on Integration. Together with Olaf Riess, he coordinates the H2020 Solve-RD project on “Solving the unsolved rare diseases” www.solve-rd.eu. He received his PhD “Summa cum laude” in 2004 and,then, he obtained his MBA degree in 2008. From 2003 until now, he has been coordinating and managing more than 10 EU funded collaborative projects. The main focus of these projects are rare and neurological diseases, among them EUROSCA, MEFOPA,SENSE-PARK, MULTISYN, NEUROMICS and PROOF.

Pr Mandy Ryan is Director of the Health Economics Research Unit at the University of Aberdeen. Her research interests centre around taking a person centered approach to valuation in health economics. She is best known for her work challenging the clinical approach to valuation that is often adopted by health economists and for developing alternative person centered approaches. She introduced discrete choice experiments (DCEs) into health economics in the early 1990s and her research has applied DCEs in a wide range of contexts to take account of the user preferences in the delivery of health care. She has recently been awarded funding by the Scottish Government to conduct an economic assessment of whether Scotland should adopt Whole Genomic Sequencing for the diagnosis of rare disorders. She will talk about her research going beyond clinical outcomes in the valuation of health care and consider its relevance to her work evaluating whole genomic sequencing.

Dr Emmanuelle Rial-Sebbag, Lawyer, Graduate in health law (Faculty Bordeaux, France), Ph.D in Health Law (European mention, University Paul Sabatier Toulouse). She is Director of research at Inserm in health law and bioethics. She is the leader of a multidisciplinary team, Health innovations ‘trajectories: bioethics challenges and impact in public health, at the Inserm/Paul Sabatier University 1027 Unit. She is an Associate lecturer in bio-law and bioethics at the University of Medicine in Toulouse (Purpan). She is involved in several research projects at National, European and International level, on the topics of biobanking and personal data, innovative therapies, biomedical research involving human beings, genetic testing and Big Data. She was the coordinator of the EUCelLEX project (FP7 2013-2016, Cell-based regenerative medicine new challenges for EU legislation and governance, GA 601806, https://www.eucellex.eu/). She is leading the UNESCO Chair “Ethics, Science and Society” (https://chairee2s.hypotheses.org/).

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