Rare and Undiagnosed Skin Diseases are numerous and heterogeneous with approximately over 600 conditions. Even though rare and complex dermatological diseases are heterogeneous they can be interconnected and share common management in the care and the field of research.
Given the number of rare and complex skin disorders, a stepwise approach was adopted. The network will first focus on the following groups of diseases:
The plan is to include in the near future other groups of cutaneous and mucous membrane disorders so that every patient -including the ones suffering from “undiagnosed skin disorders”- can benefit from an appropriate diagnosis and management and also break out their isolation through the development of new patient groups.
The diseases sub-thematic approach is associated with 4 transversal groups to provide common services and tackle shared challenges: training, deep phenotyping, research & registries and clinical outcomes .
on rare skin diseases
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