Patients are taking on ever increasing roles in advocating for medicines development, equal access to treatments across Europe and ensuring that medical information is clear, accurate and comprehensible. In order to help prepare them for these roles and as part of its commitment to empowering people living with rare diseases, EURORDIS launched its own training programme. EATRIS had the chance to participate as an observer to the 2016 edition that took place in Barcelona on June 8-10.
Started in 2008, the EURORDIS summer school was developed to fill specific support and training needs of expert patients, including an overview of clinical research and methodology, medicines development and regulatory procedures. In addition to this intensive 4,5 day face-to-face course, the training programme includes an online learning component, to be completed by participants before the course.
The course gathered approximately 50 expert patients and young researchers, eager to learn more about clinical trial methodology, key concepts on ethical considerations, funding opportunities but also how to interact with regulatory and HTA bodies. The course offered a fair balance between formal lectures, role-play sessions and interactive panel discussions, allowing participants to directly interact with a wide range of experts and be anything but passive!
Students were also informed about possible sources of funding to develop their advocacy and research activities: COST, E-RARE, H2020 or IMI funding programmes all offer opportunities for patient groups to be involved in projects. Our colleagues from ECRIN, the European Clinical Research Infrastructures Network, had the opportunity to present their vision and their collaborative approach to clinical trials, highlighting another type of stakeholders in the field to the students: the European Research Infrastructures.
Thanks to 8 years of activity, the strength of the EURORDIS Summer School lies on a strong network of alumni, who thanks to the course, have since become actively involved the activities of the European Medicines Agency (EMA) and came to share their fruitful experiences with the 2016 promotion.
EURORDIS has managed to offer throughout the years a strong, high-level, as well as unique and inspiring training programme to support patients in their increasing influential role in drug development. No doubt that the 2016 edition has inspired more patients and patients representatives to “take the lead”. Back in Amsterdam, EATRIS has already invited some of the expert patients to be involved in the upcoming C-COMEND training course in medicines development for PhD students and early Post-Docs (funded by the Erasmus + programme), and will keep on seeking further collaboration with patients representatives and particularly EURORDIS in the near future!