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International research study on burden and resources in EB - online survey

Since summer 2019, Gudrun Salamon is leading a research team of 6 people within the project on “Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa”, which is realized in cooperation with DEBRA international and the EB House Austria and funded by DEBRA Austria.

The project wants to build a better 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.

Apart 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 this study, a special focus is placed on what was or still is perceived as helpful. The project assumes that EB does not only have an impact on those affected themselves, but also on their relatives. 

Currently the project team is conducting an online survey on burdens and resources with EB with an international EB population (in German and English).

Please forward this message to people you know in the EB community.

Thank you for supporting our project by connecting us to your EB community.”
DDr. Gudrun Salamon

 

More about the survey and take part via DEBRA International‘s website.

More about the research project funded by DEBRA Austria: Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa

 

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