BUR-EB´s kick-off meeting (KoM) took place online last March 7th, 2022. This event was the opportunity to officially present the project and its objectives, as well as to plan our further activities and start exchanging experiences and knowledge regarding the project´s development.
The meeting brought together 20 participants, most of whom are members of the BUR-EB consortium and collaborators. Diana Désir, member of the European Joint Programme on Rare Diseases (EJP RD) Coordination Team, also attended the event.
The meeting was structured in two main sessions. The first one was an open session to all members and patient associations, which started with a warm welcome from the project coordinator, Renata Linertová (FIISC – Fundación Canaria Instituto de Investigación Sanitaria de Canarias), followed by a 5-minute presentation for partners introduction. Then Diana Désir gave a presentation on EJP RD and the Joint Call 2021´s main points, which is the call that funds the BUR-EB project. Renata Linertová continued and presented the background of BUR-EB and the study on the burden of rare diseases. Finally, both Renata Linertová and Michelle Perello (BUR-EB´s Project Manager) discussed with the partners the main aspects regarding the coordination and organisation of the project.
The second session was limited to official project partners only and the aim was to present all the different work packages and discuss how to proceed with the next activities and how to approach the project´s tasks. It was a very practical and valuable meeting, as partners had the opportunity to share ideas and set the next steps to be taken.
The agenda of the event can be consulted here.