Simona Bellagambi



Simona Bellagambi was elected to the Board of Directors of EURORDIS in 2012.

She is the aunt of a fifteen year old girl with Tuberous Sclerosis.

Simona served the Italian TSC Association from 1999 to 2009 as National Secretary and representative in the international network. She was also in charge of the designated help line service and contributed to the set-up of the Italian network of Centres of Reference for TSC. In addition, she has collaborated with UNIAMO, the Italian Federation for Rare Diseases, for which she became the representative in EURORDIS’ Council of National Alliances in 2005. She has also, been the promoter and coordinator in Italy of international awareness events, such as Rare Disease Day and Decide sessions within the POLKA: Patients’ Consensus on Preferred Policy Scenario for Rare Diseases project, as well as workshops on Centres of Expertise for the Rapsody project. In addition, Simona has spoken on RD issues in several national and international conferences.

Simona is a EURORDIS EUROPLAN  advisor. She is a member of the Council of National Alliances.

La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases