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Chapter Patient-generated evidence in Epidermolysis Bullosa (EB): Development of a questionnaire to assess the Quality of Life

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Epidermolysis Bullosa (EB) is a group of genetic conditions that cause fragile and blistering skin. Although there are different types of EB, which differ in severity, their signs and symptoms overlap. As a result of this disorder, patients face an unbearable burden in their lives, and their Quality...

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Autore principale: Pilo, Cinzia (auth)
Altri autori: Benedan, Laura (auth), El Hachem, May (auth), Galeone, Carlotta (auth), Mariani, Paolo (auth), Tadini, Gianluca (auth)
Natura: Elettronico Capitolo di libro
Lingua:inglese
Pubblicazione: Florence Firenze University Press 2021
Serie:Proceedings e report 132
Soggetti:
Epidermolysis Bullosa
Patient-centered approach
Quality of Life
Pseudo-Delphi
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