Epidermolysis Bullosa in Spain: A Qualitative Analysis of Its Social Impact on Families With Diagnosed Minors.
Juan Manuel Martínez-RipollMarta García-DomingoYolanda María De La Fuente-RoblesPublished in: Health expectations : an international journal of public participation in health care and health policy (2024)
The active participation of relatives of minors diagnosed with Epidermolysis Bullosa (EB) is invaluable to sociohealth professionals, legislators and researchers. A team member conducts their professional activities at DEBRA España (national patient association dedicated to enhancing the quality of life for individuals with EB and their families), actively engaging in all study phases.