SOS EB KIDS CORP
Nonprofit Organization Management - Greenwich, Connecticut, United States
SOS EB KIDS CORP Employees
SOS EB KIDS CORP Details
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 Brazilians and, even less, for patients of EB. Treatment is expensive, complicated, inaccessible for many and, in some cases, completely absent, which sometimes results in life-threatening situations for these patients.It is our mission at SOS EB Kids to ease the constant, daily struggle of patients with EB and their families by raising funds to purchase the supplies required for the expensive treatment of those whose costs are not being covered by the government. In addition, we also work to provide multidisciplinary guidance aimed at individualizing the need, providing information for health promotion and improvement of quality of life. Our principal focus is in helping children from the most underprivileged sectors of Brazilian society, but is not limited to this group. Rather, we seek to start a national conversation about this terrible condition via awareness campaigns and political activism around our cause.
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