EJP RD JTC2021 Midterm Monitoring Meeting

The EJP RD JTC2021 Midterm Monitoring meeting took place in Bari (Italy) on the past May 29-30 2024.

The convening of this Midterm Monitoring Meeting for projects funded under JTC2021 aimed to track progress and assess outcomes, drawing upon insights from both scientific and patient experts. Moreover, EJP RD endeavours to unite researchers from the diverse consortia funded through this call, alongside scientific and patient experts in the rare diseases field, as well as funders, fostering an environment that encourages exchange, discussion and collaboration.

In this meeting took place panel discussion on patient engagement in rare diseases SSH research, recognizing the indispensable role of patient perspectives in shaping research priorities and methodologies, and ultimately improving the lives of those affected by rare diseases.

Renata Linertová (FIISC) Project Coordinator of the BUR-EB project (project funded underJTC2021) presented the BUR-EB project and gave comprehensive update on the project’s progress. The presentation provided a clear understanding of the methods, development process, and plans associated with the BUR-EB project.

Renata Linertová explained that the BUR-EB project, offers an opportunity to observe how the social and economic impact of EB has changed over the last decade and how these changes could be related to the health and social policies implemented during that period.

The project will provide tools that could be used in clinical studies of novel therapeutic options, health policies or interventions. The BUR-EB project is backed up by a balanced multidisciplinary group of internationally recognized clinical dermatologists, health economists, qualitative research experts, biostatisticians and representatives from patient organisations.

Here the abstract book, which contains the updated meeting agenda and detailed information about the sessions and presentations.

Here the presentation of the BUR-EB project at the EJP RD JTC2021 Midterm Monitoring Meeting.

Núria Tarrats from DEBRA Spain and Renata Linertová, coordinator of the BUR-EB project at the EJP RD JTC2021 Midterm Monitoring Meeting.