BUR-EB Project: Socio-economic burden of epidermolysis bullosa (EB) for children (0-17 yo) with EB or adult patients (18 yo or older) and their caregivers
As a patient with epidermolysis bullosa or a caregiver of a patient with this disease, we would like to keep you informed about a research study: BUR-EB, which is being set up in seven European countries.
The aim of BUR-EB is to determine the socio-economic burden of epidermolysis bullosa today, and to compare it with that analyzed 10 years ago.
To this end, we are asking patients (children or adults) and their caregivers to take part in this study by answering a questionnaire.
This questionnaire will enable to better understand the point of view of patients and their carers on epidermolysis bullosa, to better help them. It will provide scientific documentation of this disease and its individual socio-economic impact. It will be an effective tool for discussions with the Ministry of Health in each country, and for advancing health policy on EB.
The questionnaire is available online to facilitate communication to as many people as possible:
Adults: https://survey.saosl.com/index.php/382685?lang=en
Children: https://survey.saosl.com/index.php/513356?lang=en
View online : BUR-EB Project Website
