Network Epidermolysis bullosa

The Network Epidermolysis bullosa (EB) is concerned with the causes, diagnosis, prophylaxis and treatment of EB, a group of inherited skin fragility disorders, which are characterized by trauma induced blisters of the skin and mucous membranes.

The chronic fragility of the skin has a high personal, medical and socio-economic impact on the life of the patients and their family members. So far, no causal therapy exists for EB.
The goals of the EB Network include:

• consolidation of efficient diagnostic and therapy centres in Germany
• active recruitment of patients with EB to the network through information on EB and and other rare diseases on websites, articles, lectures, trainings and collaboration with the patient organization and media
• construction of a EB data base with patient registry and material bank as a prerequisite for innovative research
• better understanding of molecular mechanisms of epidermal adhesion to basement membranes, in particular of protein-protein and cell-ligand interactions
• development of molecular therapy strategies for EB
• establishment of inter-network collaborations as a basis for larger consortia and durable structures for future management of rare diseases in Germany.

From these research activities we expect important new knowledge on EB. Better understanding of key events in the ethiopathology will deliver new diagnostic and therapeutic options and improve diagnostic services, prognostics, genetic and preventive counselling, treatment and management of EB.