In the framework of the next EPTRI General Assembly meeting that will be held in Madrid on March 27-28th, an Open Day Meeting will be organised on March 27th at the Ministry of Health.
The meeting will foresee a dedicated focus to patients through a workshop where the actors will be youth leaders of the Young Persons Advisory Groups (YPAGs) involved in the project, who will discuss about patient and public involvement in research. They will present their direct experience in the project and the contribution, current and potential, to the design of the new European Paediatric Translational Research Infrastructure aimed to bridge the gap represented by the lack of age-tailored paediatric medicines.
The EPTRI project takes care of the voice of the patients and their families with dedicated tasks to facilitate the consultation and involvement of children and young patients and to ensure that the design of the future research infrastructure (EPTRI) is patient centered. The second part of the workshop on PPI (Patient and Public Involvement in Research) will focus more on the research activities of the four thematic platforms with the objective of developing a guidance with recommendations for the involvement of patients and their families in each of them.
Moreover, a roundtable with the EU stakeholders will be held in the afternoon session involving representatives from paediatric networks, RIs, ERNs, charities, patients’ associations, YPAGs, companies’ federations, regulatory agencies, governments and authorities to promote the entrance of EPTRI in a global framework of partnership able to strengthen paediatric research.
If you are interested in attending the meeting, please send an email to [email protected].
Save the date in your calendar and enjoy the meeting!