The workshop organized by the TEDDY Network in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJP RD), was held the past July 11th -15th at the University of Lyon (France) during the 2022 International Children’s Advisory Network (iCAN) Summit (please see here for more details).
11 European rare youth patients coming from Latvia, Greece, France, Switzerland, and Italy, together with many youth patients and healthy peers from 4 different continents and over 23 countries, were in Lyon to join the interesting and high-profile sessions and activities planned during the iCAN Summit.
The sessions, held at the University of Lyon and at the Groupement Hospitalier Est – HCL, were focused on Rare Diseases (RDs) and participants learned from Clinical Researchers, Doctors, Nurses, and experts about the RDs scientific aspects, ethics, research, and innovation. They also learned the importance of advocacy groups as well as sharing the condition of the difficulties of living with a chronic disease.
The sessions were highly interactive allowing the participation of all the young attendants and the gathering of ideas to improve paediatric clinical research. Indeed, youth participants were actively involved in several practical initiatives and worked on the conception and development of a serious game. Moreover, they learned about Animation and Storytelling and reviewed paediatric clinical trial materials to provide constructive suggestions to make them more useful and comprehensible. They provided detailed indications to increase the understanding of research and its process for children and their parents.