The ERN-Skin is the European Reference Network for rare, complex and undiagnosed skin diseases. It is now composed of 56 members, 4 affiliated partners and over 20 patient representatives from 22 countries, joining their efforts to improve diagnosis and management for the patients. On the occasion of its 2019 Board Meeting, the ERN-Skin health care providers and patient groups presented useful and practical tools to deal with situations of emergency.

The first tool is an emergency card for patients. As big as a credit card, this 4-page document fits in the patient's wallet. It provides the patient's identification information, key message ("my skin and mucosae are extremely fragile" for Epidermolysis Bullosa patients, "this infant is at risk of overheating" for Ectodermal Dysplasia patients, "my skin is fragile and painful" for ichthyosis patients), a short description of the disease, actions to avoid, recommended measures, emergency and medical contact.

The second emergency chart is for health professionals: it provides a short definition and the commonly used long term treatment of the disease, the pre-hospital emergency care recommendations with the specific risks in emergency situations, the recommendations for hospital emergency departments including emergency issues and recommendations, drug interactions, precautions for anesthesia, preventive measures, contact information of the expertise centers and patient groups, documentary resources. The ERN-Skin partners are developing charts for very specific and acute situation in Epidermolysis Bullosa such as acute feeding inability in newborns/infants, acute airway obstruction, acute esophageal obstruction, acute urinary retention, sepsis and also corneal erosions, with the advice of the ERN-Eye experts.