Practical management of epidermolysis bullosa: consensus clinical position statement from the European Reference Network for Rare Skin Diseases

Inherited epidermolysis bullosa (EB) comprises rare disorders that manifest with fragility and blistering of the skin and mucous membranes, with variable clinical severity. Management of EB is challenging due to disease rarity and complexity, the wide range of extracutaneous manifestations and a profound impact on daily life for the patient and family members. Although reference centres providing multidisciplinary care for EB exist in each European country, it is common for healthcare professionals that are not specialized in this rare disorder to treat EB patients. Here, experts of the European Reference Network for Rare and Undiagnosed Skin Diseases (ERN-Skin, ) propose practical recommendations for the diagnosis and management of the commonest clinical issues, skin blisters and wounds, oral manifestations, pain and itch.

Automated summary

Inherited epidermolysis bullosa (EB) includes rare disorders that cause fragility and blistering of the skin and mucous membranes, with varying clinical severity. Management of EB is challenging due to its rarity, complexity, and impact on daily life. Experts from the European Reference Network for Rare and Undiagnosed Skin Diseases (ERN-Skin) offer practical recommendations for diagnosing and managing common clinical issues related to EB.