The first paediatric expert patients training workshop, organised by 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 (EJPRD) was kicked off on 26 November 2021.
15 participants aged from 12 to 18 years of age including patients with a chronic rare condition were selected to participate in the workshop. They come from 9 different countries: Georgia, Italy, Croatia, Russia, Albania, Spain, Romania, Portugal, Germany.
The workshop is divided into 4 sessions (one session per month) of maximum 2 hours and a half. The first session is mainly dedicated to introduce the EJPRD goals and activities, to present the participants through ice-breaking activities and to know more about the rare diseases peculiarities with a practical case study.
The workshops are performed in English and delivered by paediatricians, investigators, psychologists, representatives of patients’ associations, YPAGs facilitators, legal, ethical and regulatory experts.
They will end on 28 February 2022 with the organisation of a raise awareness activity to celebrate the worldwide Rare Disease Day, according to the following timeline of the meetings:
