OIFE’s new vice president Alessandra Tolaccia was invited by European Patients’ Academy on Therapeutic Innovation (EUPATI) to take part in the HTA4Patients Ambassador Workshop in Rome, Italy on June 30, 2025. Health Technology Assessment (HTA) is a multidisciplinary process that evaluates the properties, effects, and impacts of health technologies like new therapies or medical devices.…
Since our newly elected Vice President Alessandra Tolaccia is a fellow from European Patients’ Academy on Therapeutic Innovation (EUPATI), she was invited to attend the Patient Engagement Open Forum (PEOF) which took place in Baveno, Italy from June 10-12. Straight from OIFE Conference 2025, she attended 2,5 days of educational talks and workshop about patient…
“We feel informed, motivated and supported!” Background Through our activities the last couple of years, we have realized that our member organizations are struggling more and more with various challenges. These include knowledge of and strategies concerning communication, fundraising, advocacy, recruitment of new members and board members. It was the view of the OIFE Board…
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)…
Alessandra Tolaccia is representing OIFE at the EUPATI Patient Expert Training Programme. The EUPATI Expert Training Course is a unique opportunity for patient advocates to receive expert-level training in medicines research and development, specifically tailored for them. The certificate course is a mixture of online and face-to-face education modules over a 13-month period. April was…
By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…
This week representatives from OIFE attended two different online sessions connected to the Patient Engagement Open Forum, which is a series of virtual educational sessions on patient engagement. The Forum is hosted by PARADIGM, PFMD and EUPATI aims to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation…
