Fondazione REB ETS is a moral entity whose mission is to foster scientific and medical research on rare diseases with particular focus on EB. EB is caused by genetic mutations that compromise proteins responsible for skin and dermis adhesion. In children and affected people, any action generating minimal friction, such as rubbing or pressure, causes painful bladders and sores throughout the body. Because of the fragility of their skin, babies with EB are also called butterfly children. Fondazione REB collaborates with all main Italian and international Clinical EB centres, hospitals and top scientific researchers in the genetic diseases field at worldwide level. EB is now one of the 6 rare genetic condition out of thousands that has new therapies under development. For this reason we are increasing our collaboration with the pharmaceutical industry and with public sector institutions, to accelerate the application of the treatments in Italy and improve the socio-sanitary care on all rare diseases.