In the framework of the European Joint Programme on Rare Diseases (EJPRD), TEDDY European Network of Excellence for Paediatric Research is organising the first paediatric expert patients training workshops in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation.
The workshop is addressed to patients with a chronic rare disease, aged from 12 to 18, interested in the themes of health, biomedical research, healthcare, and children rights. 15 paediatric patients in Europe will be selected to participate in the workshop by a dedicated Project Committee.
The workshop aims at preparing young patients to actively participate in scientific research and play an important role in improving research and healthcare services for all patients by contributing with their own specific experience.
The workshop will take place online from November 2021 to February 2022 and will include monthly sessions of two and a half hours. Case studies, practical activities and discussions are foreseen in order to make easier the comprehension of the topics presented.
Applications can be sent by November 23rd filing in the registration form.