HTx at EURODIS Summer School 2019 in Barcelona, Spain

In June 2019, three representatives of the HTx Consortium attended the Eurordis Summer School in Barcelona, to introduce future patient experts and advocates to the aims, methods and ambitions of the HTx project.

The Eurordis Summer School is a one-week face-to-face training for patient advocates, taking place in Barcelona in June, which welcomes around 40 participants every year.

Since 2008, more than 400 participants from over 40 countries representing more than 75 diseases have participated. Thanks to connections provided by EURORDIS, alumni members have gone on to become members of scientific committees at the EMA and participate in activities related to the European Network of HTA agencies (EUnetHTA).

Eurordis Summer School is part of the Eurordis Open Academy, which operates independently, ensuring there is no conflict of interest in the program design, content, faculty or funding mechanisms.

The training aims to provide participants with the knowledge and skills needed to become experts in medicines research and development. Over 20 Eurordis Summer School trainers provide the training each year. By providing training, EURORDIS empowers patients and ensures they have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicine development with policymakers, industry, and scientists. Patients are experts in their diseases and have a valuable contribution to make to shaping meaningful rare disease research, policies, and services.

The Eurordis Summer School training covers topics including clinical trial methodology, clinical research, ethics in medicines development, regulatory affairs, pharmacovigilance, health technology assessment and all forms of patient engagement.

The HTx Consortium was represented by Bertalan Németh (Syreon Research Institute), Thomas Patton (University of York) and François Houyez (EURODIS) with fascinating presentations.

Bertalan Németh (Syreon Research Institute) presenting at the EURODIS Summer School 2019 in Barcelona on behalf of the HTx Consortium

From left to right: Thomas Patton, University of York; François Houyez, EURORDIS; Russell Wheeler, LHON Society, Anne Willemsen, EUnetHTA