Within the European Joint Programme on Rare Diseases (EJPRD), Pillar 3 WP15, TEDDY is responsible of the preparation for the educational materials and training activities for the paediatric patients.
Education of young people is essential to incorporate them as advisors along the drug development process. A patient-centred approach can improve the capacity of collaboration with the different agents who participate in the translational research process and in the development of innovative medicines.
The foreseen objectives of WP15, task 15.4, will be achieved in the following three years and they include in particular: Development of an educational e-learning package on rare diseases, paediatric medicines development and clinical research; preparation of training events dedicated to paediatric patients with the aim to enable them to be an active part in all the decision-making processes related to research; organization of events to Increase the awareness and promote the advocacy and advisory role of paediatric patients.
Engaging children early in the research process allows designing clinical trials according with their needs and preferences. This important feature impacts directly in the future recruitment and adherence.