Interview with Alessandra Tolaccia, new OIFE Board Member Welcome to the OIFE Board Alessandra, can you tell us a little bit about you? My name is Alessandra Tolaccia, I am 49 years old, and I am Italian. Since 2020 I am living in Italy together with my husband Marco, after few years spent in South…
OIFE’S FIRST EUPATI FELLOW ALESSANDRA We congratulate our Italian volunteer Alessandra Tolaccia with her graduation in Madrid today, as OIFE’s first EUPATI fellow. The EUPATI patient expert training programme on medicines research and developent is organized by the European Patients’ Academy on Therapeutic Innovation (EUPATI). The programme consists of six modules: 1) Getting started, 2)…
New record! This year OIFE members had 4 participants at Open Academy Medicines Research and Development School and Scientific Innovation & Translational Research School: Inger-Margrethe (Norway), Penny (UK) and Alessandra and Leonardo (both from Italy). The course took place in Barcelona and the two courses ran in parallel from Monday to Wednesday (June 3-7, 2024).…
Are you interested in research & policy work? As a European umbrella organization, we are more and more often asked to recruit patient representatives for research projects related to OI. This includes both clinical research and basic research. OIFE therefore needs to recruit and educate more people who can represent the voices of people with…
OIFE is a member of the rare disease umbrella organization EURORDIS. At least four of OIFE’s patient representatives have graduated from EURORDIS Summer School, but we are always interested in recruiting more patient experts. Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise…
