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 achievements related to the two aims of the project:
1) Assessment of EB socio-economic costs and impact on quality of life through an online survey addressed to affected individuals and their caregivers in seven European countries,
2) A qualitative study focusing on the development of educational materials and patient journey maps in collaboration with patient associations.
Thanks to the dissemination activity by International and national DEBRAs, the survey resulted in a high participation rate with 349 complete questionnaires (207 adults and 142 children), representing the largest dataset on EB available to date.
Analysis of direct and indirect healthcare costs showed the major contribution of caregiver care, accounting for about 60% of total costs. Though with differences between European countries, costs were higher for children and severe EB types. Most costs were covered by National Health Services, but some expenses continued to be paid by affected individuals and families with a significant financial impact.
Evaluation of quality of life with different generic and disease-specific instruments confirmed the major burden of EB and its correlation with disease severity. At the same time, findings highlighted a profound emotional and psychosocial impact also in individuals with less severe EB types. Of note, the BUR-EB project allowed the translation and validation in four additional European languages of an EB-specific questionnaire which will represent a useful instrument for patient-reported outcome measures in future research .
The qualitative study was carried out in strict collaboration with patient associations, EB individuals and their carers. Fourteen educational materials were produced representing:
- Useful and accessible empowerment tools helping affected individuals and their families to cope with EB multifaceted challenges;
- Informative and clear instruments to disseminate disease knowledge in order to prevent social isolation. In parallel, three Patient Journey Maps were developed illustrating patient and caregiver specific experiences and challenges during the disease course.
Final discussion focused on the dissemination strategy of all project results and educational materials, in which patient organizations will play a key role.
