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Member of the Board of Directors
Aunt of a twenty- four years old girl with Tuberous Sclerosis Member of the Board of Directors of EURORDIS European Organisation for Rare Diseases Representative of UNIAMO FIMR –Italian National Alliance for Rare Diseases in the Council of National Alliances of EURORDIS and international initiatives and projects Main Duties and responsibilities Since 2007- currently UNIAMO FIRM Representative in the EURORDIS Council of National Alliances and international initiatives Since 2012- currently Member of the Board of Directors of EURORDIS Since 2019 Member of the Panel of experts RARE2030 Since 2019- currently member of the EURORDIS Newborn Screening working group on behalf of UNIAMO FIMR Since 2018- currently member of the EURORDIS Community Engagement Task Force for UNDIAGNOSED DISEASES in the SOLVE-RD project on behalf of UNIAMO FIMR Since 2017- currently Appointed EURORDIS Board Member in the RDD Steering Committee and Strategic Review 2017-2018 EURORDIS Advisor in RD-ACTION 2015-18 National Workshops on priorities within National Plan/Strategy, Support and supervision of the Spanish and Italian Workshops Contribution in the drafting of EURORDIS position papers on different issues 2012-2015 / 2009-2011 EURORDIS Advisor in EUROPLAN Project I and II for the development of National Plan for Rare Diseases. Supervision and support for the organisation of National Conferences held in Greece, Italy and Spain. Since 2008 Coordinator in UNIAMO of the Italian events of the Rare Disease Day and member of the EURORDIS Advisory Committee 2007 Organizer of the Italian seminar “European Networks and National Centres of Expertise" at the National Institute of Health within RAPSODY Project Since 2004 Speaker at National and International Conferences on Rare Diseases related issues on behalf of EURORDIS and UNIAMO FIMR 2001 Co-organizer and speaker of the TSC International Conference in Venice and in Rome 2007 1999-2009 National Secretary of the Tuberous Sclerosis Association and International representative. Contact for TS patients and their families on medical and scientific issues.