Download Domenica Taruscio Biography

Domenica Taruscio, M.D. is the Director of the Italian National Centre for Rare Diseases at
the Italian National Institute of Health (Rome, Italy). She holds a M.D. and a specialization
in Histopathology from the University of Bologna, a master in Bioethics from the Rome
University) a has carried out post-doctoral studies in Human Genetics at Yale University
(CT-USA).
She is Past-President (2010-2012) of ICORD (International Conference for Rare Diseases
and Orphan Drugs) Society; has been the Italian COMP (Committee for Orphan Medicinal
Products) Member at EMA (2000-2009); a member of the former European Rare Diseases
Task Force, EUCERD (European Union Committee of Experts on Rare Diseases) and a
Member of the “Health Research” Advisory Group.
Dr Taruscio is a Member of the Interdisciplinary Committee of IRDiRC, a member of the
Advisory European Molecular Genetics Quality Network management board, a Member of
the Management Board of the European Molecular Genetics Quality Network (EMQN),
and she has been member of the advisory board of Eurogentest (NoE). She has been
newly appointed to the European Commission Experts Group on Rare Diseases.
Scientific Coordinator of numerous EU and international projects on rare diseases such as:
EUROPLAN (European Project for Rare Diseases National Plans Development);
EPIRARE (European Platform for Rare Disease Registries); RARE-Bestpractices;
contributes as WP leader to RD-Connect, Advance-HTA, BURQ-OL, E-RARE, EUROCAT
Joint Action, to name few.
For decades, her efforts have been mainly directed to face the many and complex
challenges posed by rare diseases and has addressed them from various facets: from
science to society, from experimental research to public health, from training health
professionals to the empowerment of patients and their families - having always at heart
the quality of life of rare disease patients and of their families.