28 Nov Debra Italia
Advancing research for butterfly kids
Debra Italia onlus is the Italian association focused on epidermolysis bullosa (EB). Debra has been operating in Italy since the early nineties promoting social and health care activities, raising awareness within the patients’ community and fostering research on EB.
Epidermolysis bullosa, also known as the diseases of “butterfly kids”, is a severe rare genetic disease causing the skin and mucous membranes to be very fragile. Blisters and areas of skin loss -which can be quite large- occur since birth as a result of minor injuries or friction.
In Italy, EB affects 1 in 82000 children; there is currently no cure for this disease.
Science Compass is assisting Debra Italia along the plan to trigger research on EB; the ultimate goal is to identify novel approaches for therapy development and disease man-agement.
Among the first actions taken within this strategic framework was the activation of a disease registry to foster sharing and collaboration within the patients’ and scientific communities.