Facing the complex challenges of people with epidermolysis bullosa in Austria: a mixed methods study on burdens and helpful practices.

Gudrun Salamon Ursula Field-Werners Sophie Strobl Vinzenz Hübl Anja Diem

Published in: Orphanet journal of rare diseases (2024)

The outcome is mapped to concrete implications regarding targeted support for EB patients and their relatives on an individual level and their needs in regard to the Austrian health care system.

Keyphrases

end stage renal disease
ejection fraction
newly diagnosed
healthcare
primary care
peritoneal dialysis