Scientific Advisory Board
The Scientific Advisory Board of ERN BOND is responsible for giving scientific advice on the network activities, providing foresight and helping with up and coming priorities in the healthcare self-management domain.
The SAB is composed by 5 experts in different areas. They have been individuated outside the Network and nominated, through voting, by the Management Committee and Steering Committee.
Public Affairs Director & Head of European and International Advocacy - EURORDIS
Valentina Bottarelli joined EURORDIS in 2007, where she is responsible and provides policy analysis and strategic advice on EU policies having an impact on the lives of people living with a rare disease.
As Head of Advocacy, she is responsible for supervising and coordinating actions that EURORDIS leads in support of EU and international public policies that enhance the health and wellbeing of people with rare disease people and their carers.
Valentina has extensive experience in the area of EU policies and programmes. As well as managing European funded projects, she has worked as a senior consultant in public affairs and communications at Fleishman-Hillard, leading public affairs consultancy in Brussels. She has also worked at the European Commission, Directorate External Affairs. Valentina holds a Master of Arts in European Political and Administrative Studies from the College of Europe in Bruges and university degree cum laude in Political Sciences from the LUISS-Guido Carli University, Rome.
Brendan Lee, MD, PhD
Professor and Chairman - Baylor College of Medicine, Houston, Texas
Brendan Lee, as a pediatrician and geneticist, conducts a research program aimed to translate the study of structural birth defects and inborn errors of metabolism into a basic understanding of development, disease and novel therapeutic approaches. His long standing focus has been the study of human inborn errors of metabolism and structural birth defects of the skeleton.
His laboratory research program is linked with clinical research that is performed as part of the Skeletal Dysplasia Clinic and the Metabolic Disorders Clinic at Texas Children’s Hospital, and two NIH clinical research networks. He is founder and director of the Center for Skeletal Medicine and Biology at the Baylor College of Medicine (BCM).
Currently, he is the overall PI of the NIH Brittle Bone Disorders Rare Disease Clinical Research Consortium (BBD RDCRC) and NIH Undiagnosed Diseases Network Clinical Site at BCM.
From a training perspective, he founded and co-directs the Medical Research Pathway program at BCM where medical students spend an additional dedicated year performing hypothesis based basic, translational, and/or clinical research.
Ana Rath, MD
Director of INSERM US14 - Orphanet
Ana Rath is a medical doctor with a background in general surgery and a Masters degree in Philosophy. She oriented her career to medical information and terminologies in 1997 and joined Orphanet in 2005, where she has been Manager of the Orphanet Encyclopaedia, then Scientific Director, and currently Director of Orphanet and Coordinator of the Orphanet network.
Ana has coordinated RD-ACTION, the EU Joint Action for rare diseases (2015-2018) and the IRDiRC’s Scientific secretariat. She chairs the Orphanet Rare Disease Ontology (ORDO), and she was a member of the WHO’s ICD11 Revision Steering Committee. She currently coordinates RD-CODE, implementing rare disease codification, and co-chairs the European Joint Programme for Rare Diseases Pillar 2 (Coordinated access to rare diseases data and resources).
Michaela Th. Mayrhofer, PhD
Head of ELSI Services & Research at BBMRI-ERIC
Michaela Mayrhofer serves as Head of ELSI Services & Research at BBMRI-ERIC. During her academic career, she held various positions at the Centre de Recherche Médecine, Sciences, Santé et Société, the University of Vienna, the Institute of Science, Technology and Society Studies at Alpen-Adria-Universität Klagenfurt/ Vienna/Graz, the Technical University of Vienna, the Medical University of Graz, and the University of Newcastle.
Her research and implementation interests lie in the politics and governance of the life sciences. She is further spearheading the Code of Conduct for Health Research initiative and partakes in several H2020 projects in various roles. She is part of the EJP RD Advisory and Regulatory Ethics Board.
Matthew Warman, MD
Professor of Genetics and Orthopaedic Surgery - Harvard Medical School, Boston
Matthew Warman is Professor of Genetics and Orthopaedic Surgery at Harvard Medical School, Boston. He also serves as the Director of the Orthopaedic Research Laboratories at Boston Children’s Hospital. Dr. Warman received a Sc.B. in Engineering from Brown University in Rhode Island and an M.D. from Cornell University in New York.
Dr. Warman’s research focuses on patients with genetic diseases that affect the skeleton. He and members of his lab have contributed to the identification of disease-causing genes for Mendelian disorders. The overall goal of his work is the discovery of interventions that can prevent, delay, or reverse consequences of heritable and acquired skeletal diseases.
Dr. Warman serves on the Research Executive Council and as the Chair of the Institutional Animal Care and Use Committee at Boston Children’s Hospital. He also is a member of the Medical Advisory Board of the Osteogenesis Imperfecta Foundation and the Scientific Advisory Council of the Fibrous Dysplasia Foundation.