Simona Bellagambi

UNIAMO Italy

e-mail: bellagambi.estero@uniamo.org
www.uniamo.org

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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases