The first online paediatric expert patients training workshop, devoted to 15 paediatric patients in Europe, is organised by TEDDY European Network of Excellence for Paediatric Research in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD). The EJP RD is an EU-funded project aimed at raising the level of knowledge and awareness within the rare diseases (RD) research, and train expert patients on scientific innovation and translation research aspects through workshops, education material and activities for patients.
This course aims at making young patients ready 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.
In order to do this, it is necessary to be well trained and properly educated on the main themes of scientific and biomedical research.
The training workshop will foresee case studies, practical activities & discussions in order to make easier the comprehension of the topics presented and to assess if the expected objectives are reached.
The workshops will be performed in English and delivered by paediatricians, investigators, psychologists, representatives of patients’ associations, YPAGs facilitators, legal, ethical and regulatory experts.
This year, the workshop will be organised in online mode. The workshop will be divided into 4 sessions (one session per month) of maximum 2 hours and a half. The first session will start in the second half of November 2021 and will end on the 28th of February 2022 with the organization of a raise awareness activity to celebrate the worldwide Rare Disease Day.
If you are interested in the course and advocate for rare disease research, please fill in the registration form that you can find at this link: https://forms.office.com/r/gigjbVSwaS
The deadline for sending the application is October 30th.
Please be informed that your personal data will be kept strictly confidential and all information will be handled through very secure electronic systems and used only for the purpose of the meeting.
All the applications will be evaluated by a Project Committee composed of members from TEDDY European Network of Excellence for Paediatric Research and Sant Joan de Déu Research Foundation that are leading this initiative. Results will be communicated to you and your parents at November 2021.
The participants will be selected according to the following criteria:
- Good English proficiency
- Age (between 12 and 18)
- Country (in order to guarantee a fair geographic representation, no more than 2 minors per country will be selected)
- Motivation and interest in improving health research
- Participation in specific advisory groups or paediatric patients’ organisations.
In case of selection, a specific written parental authorization and an assent form will be required.
