BUR-EB 2nd-year Meeting

The BUR-EB 2nd-year Meeting took place on last June 11th, 2024 at the Necker Enfants Malades Hospital in Paris, France. Consortium partners and DEBRAs from various countries, including DEBRA International, attended the meeting.

The purpose of the BUR-EB 2nd year meeting was to present a comprehensive update on the project’s progress. The presentation provided a clear understanding of the methods, development processes, and plans associated with the BUR-EB project.

The Project Coordinator Renata Linertová (FIISC) presented the development of the questionnaire, and the situational analysis completed by IIER (report is available here).

Launch of the survey of socio-economic burden was announced, highlighting the importance of collaboration with all DEBRA organizations.

Gudrun Salamon and Sophie Strobl from SFU  explained the complex process of linguistic validation of the EB-specific scales QOLEB and EB-BoD.

Alezandra Torres from FIISC presented the qualitative study, focusing on the Patient Journey Mapping (PJM), informational materials for self-management, and workshops to gather information from patients and families.

Márta Péntek from HECON presented the plans for the upcoming analysis of the socioeconomic burden and costing methodology.

Following a question-and-answer session, the meeting concluded after more than two hours. The agenda of the event can be downloaded here.