Sos Eb Kids Corp

sos eb kids is a tax exempt non-profit organization recognized by the irs under section 501 (c) (3). the organization started when a group of friends became aware of the immense, lifelong suffering borne by patients of eb and felt they had to take action. epidermolysis bullosa (eb) is a rare and serious, non-contagious, genetic illness, for which no cure has been found. it is characterized by acute sensitivity in the skin and mucosal membranes. patients with eb develop blisters and sores in response to minor types of skin trauma - a mere touch upon or pressure to their skin, or even just changes in weather. these lesions can be both external and internal and can appear inside the mouth, in the esophagus and the rectum. patients of eb are affectionately referred to as “butterflies,” a reference to their fragile skin. the brazilian constitution affirms that health is a basic civil right and a duty of the state. unfortunately, this declaration does not represent a daily reality for many