|
|||
|
>>The Epidermolysis bullosa network is concerned with the cause, diagnosis, prophylaxis and treatment of Epidermolysis bullosa (EB). EB is a group of inherited skin disorders, which are characterized by the formation of trauma-induced blisters of the skin and mucous membranes.<<
The chronic fragility of the skin of patients with EB has personal, medical and socio-economic effects not only on the patients themselves, but also their relatives. At the moment there is no causal therapy for EB. The research plans of the Network have two main aims: firstly, improved clinical and diagnostic possibilities, as well as more complete documentation in the form of a patient register and database. Secondly, a better understanding of the disorder as a prerequisite for the development of molecular and gene therapy initiatives. This knowledge can be gained through clinical, molecular, cell biological, structural, transgene and gene transfer studies. Cooperation within the EB network is expected to result in new knowledge about the pathophysiology of EB. An understanding of the key pathogenic mechanisms involved in EB will provide new diagnostic and therapeutic possibilities and will also have an effect on the diagnostic services, prognosis, genetic and preventive counselling, and the care of EB patients.
