Personal Information 

Surname/First name: Bellagambi Simona
Nationality: Italian

High School Graduation

Aunt of a twenty- three 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 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 2005 Representative of the Italian Alliance for Rare Diseases UNIAMO FIMR in the Council of Alliances of EURORDIS. Linkage between European and national activities and information.

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.

Chrysoula Kordouli, Τ: +30 210 6617777 (ext. 204), +30 6946236795, E: [email protected]
  Natalia Toubanaki, T: +30 210 6617 777 (ext. 289), +30 6947936708, E: [email protected]
Valya Kyritsi, T: +30 210 6617 777 (ext. 227), E: [email protected]