Institute for Rare Diseases advances with it’s 11-th EU project – BUR-EB: Changes in the Socio-economic Burden of Epidermolysis Bullosa in Europe. Epidermolysis Bullosa (EB) is a rare genetic skin disorder 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 are 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.
The online questionnaires for Bulgaria, aimed at patients with EB (Epidermolysis Bullosa) and their caregivers, are now available for completion.
If You are affected by EB and live in Bulgaria, please participate in our survey at the following links:
Adult Patient and Caregiver Questionnaire:
➡️ https://survey.saosl.com/index.php/382685?lang=bg
Pediatric Patient and Caregiver Questionnaire:
➡️ https://survey.saosl.com/index.php/513356?lang=bg
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.
More info you can find on the BUR-EB project website.