In ERDERA, TEDDY is tasked with the organization of a yearly training program, implemented during a 2–3 day training course, involving 20 young patients (12-18) with rare diseases.
This training will be hosted each year for the whole duration of ERDERA, starting from 2025. By engaging different Young Persons Advisory Groups (YPAGs) of the TEDDY KIDS Network we will focus on topics such as patients’ and children rights, engagement and participation in clinical trials, the consent/assent issues, innovative therapies, and much more!
Young patients will be engaged in all phases of this process, taking into account their expectations and feedbacks concerning the training material, contents and training methodology, becoming a consulting group of informed and motivated young patients.
We are deeply committed to make this into a great opportunity for our kids and a life-changing learning experience!
#RareDiseases #PediatricResearch #ERDERA #CVBF #ChildrenEngagement #InternationalCollaborations
