from the medical aspects, quality of life is a crucial factor for
well-being in chronic diseases such as EB. In this context, the balance
between individual burdens and resources is essential. In our study, a
special focus is placed on what was or still is perceived as helpful. We
assume that EB does not only have an impact on those affected
themselves, but also on their relatives. With this study, we would like
to build a betterer understanding on burdens and helpful factors in
dealing with EB - with the aim of being able to provide better support to people living with EB as well as their relatives.
- you have EB yourself or
- a close relative of yours has EB or has passed away from EB, e.g. your partner, your child, your sister, your brother, your mother, your father or another close relative:
Thank you for taking the time to participate in this survey.
It will take approximately 30-40 minutes to answer the questions. Your answers are anonymous and
cannot be linked to you personally. Please take your time to complete
the questionnaire and answer the questions as honestly as possible. If
you feel uncomfortable answering any of the questions, you may choose
not to answer them. If you have any further questions, please contact
the study director DDr. Gudrun Salamon at any time at
Thank you for your participation and all the best!
is supported by DEBRA Austria and DEBRA international.