Changes in the Socio-economic Burden of
Epidermolysis Bullosa in Europe
Epidermolysis Bullosa (EB) is a rare genetic skin disorder with no cure that places an enormous social and economic burden on patients and their families. Studies on this burden are scarce. The BUR-EB project aims to estimate the socio-economic burden of EB in 6 EU countries (Spain, France, Germany, Italy, Hungary and Bulgaria), and to compare it to data collected 10 years ago in the BURQOL-RD project.
Data related to the impact of EB on every-day life will be collected from affected persons and their caregivers via an anonymous survey in collaboration with clinicians and patient organizations (DEBRA). Based on the results, information materials will be developed to help patients and their families cope better with the illness.BUR-EB 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.
1) Estimate the socio-economic burden of EB in 6 EU countries (Spain, France, Germany, Italy, Hungary and Bulgaria), and to compare it to data collected 10 years ago in the BURQOL-RD project.
2) Co-create EB patients’ journey maps and self-management materials for patients and caregivers.