The BUR-EB project has published Educational Materials on Epidermolysis Bullosa (EB) on its website, developed for patients, caregivers, and healthcare professionals. These resources, created collaboratively with direct input from people affected by EB and experts in the field, are now available in Spanish, English, Italian, French, Hungarian, Bulgarian, and German. The content reflects the voices …
On October 8, SESCS/FIISC welcomed researcher Áron Hölgyesi, member of the Health Economics Research Center (HECON) at Óbuda University (Budapest, Hungary). During his visit, Dr. Hölgyesi gave a scientific talk presenting the main research lines of his center, focused on health economic evaluation and the measurement of disease impact on quality of life. He also shared the results of the cost study …
Scientific visit of researcher Áron Hölgyesi (HECON, Budapest) Read More »
The Final Conference of the European project “Changes in the Socio-economic Burden of Epidermolysis Bullosa in Europe” (BUR-EB), coordinated by Renata Linertová, was held on October 7th, 2025, in Santa Cruz de Tenerife, with the participation of representatives from all project partners and patient associations, DEBRA International and national DEBRAs. The meeting focused on the …
Final Conference of the European Project BUR-EB in Santa Cruz de Tenerife Read More »
On October 7, 2025, Santa Cruz de Tenerife will host the Final Conference of the BUR-EB Project, an international initiative dedicated to estimating the socio-economic burden of Epidermolysis Bullosa (EB) in 7 EU countries (Spain, France, Germany, Italy, Hungary, Austria and Bulgaria). The conference will bring together researchers, healthcare professionals, and representatives of patient organizations (DEBRA) to present the main results …
Tenerife to Host the Final Conference of the BUR-EB Project Read More »
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 …
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 …
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 …