Many skin conditions have a severe impact on patients and can be associated with a risk of cancer. Diagnosis of rare and complex skin diseases consists of a full assessment of the skin and mucous membrane, as well as other systems, and skin biopsies. Only experienced dermatologists can differenti- ate between these complex conditions. The absence of an expert diagnosis is a barrier to treatment. This can be a profound physical and psychological burden for patients.
This network brings together leading experts in the field of rare child and adult skin diseases to exchange knowledge, update and develop best practice guide- lines, and improve professional training and patient ucation.
It aims to improve healthcare organisation with the pooling of resources, including a plat- form with expert pathologts for a centralised study of slides and collaborative discussions on difficult cases. For every disease covered, core multidisciplinary teams will include a dermatologist, a nurse, a psychologist, a geneticist, a dietician and a pathologist, along with other specialists as quired.
ERN Skin will also develop rare skin disease registries allowing participation in research programmes and clinical trials with well-char- acterised patients, as well as the stimulation of therapeutic research with sufficiently larger cohorts of patients. In addition, a comprehen- sive socio-economic study on the individual burden of diseases will be conducted.
Registry
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