Publications by authors named "V Zmazek"
Article Synopsis
- Inherited epidermolysis bullosa (EB) is a rare genetic condition causing severe skin and mucosal fragility, necessitating a palliative approach to manage its life-limiting symptoms and improve patient comfort.
- A consensus guideline was established by an international panel, which included medical experts and individuals affected by EB, to develop evidence-based recommendations for effective palliative care.
- The article outlines best practices for interdisciplinary healthcare teams to address the specific needs of EB patients, enhancing their quality of life regardless of the disease stage or subtype.
Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed.
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