About Us
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 characteriz
ed 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 re**um. 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.
“Our mission is to alleviate the suffering of Brazilian kids with EB, improving their quality of life and that of their loved ones, whether through material and emotional support or through information and awareness.”
VALUES
● Care
● Dedication
● Compassion
We are volunteers in this effort, working out of love and dedication to this cause. No one from our organization receives financial compensation nor possesses any political interest in this issue. Our only motivation is our desire to see Brazilian patients with EB cared for, free and living with dignity. SOS EB Kids maintains no links with political parties nor with any religious institutions. We do not judge, we do not pressure and we do not expect anything in return for the supplies we donate. We are an independent organization based on a sense of solidarity alone, moved exclusively by compassion and love for our fellow citizens. HOW YOU MAY HELP
We need your help! Financial support is what makes our work possible and we invite you to join our network of supporters. You may donate via PayPal (using the email address [email protected]) or by sending us a message and inquiring about other ways to help. Thank you and welcome to SOS EB Kids! SOS EB Kids Team
