The SOS EB Kids
SOS EB Kids is a 501 [c]  charity that started when a group of friends, made aware of the immense, lifelong suffering borne by patients of EB, felt they had to take action.
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 nowhere more so than for patients of EB. Treatment is expensive, complicated, inaccessible for many and, in some cases, wholly absent, the results of which can be life-threatening for these patients.
It is our mission at SOS EB Kids to ease the constant, daily struggle of patients with EB and of their families by raising funds to purchase supplies required for the expensive treatment of those whose treatment costs are not being covered by the government. Our principal focus is in helping children from the most underprivileged sectors of Brazilian society but is not limited to this group. Rather, we also seek to start a national conversation about this terrible condition via awareness campaigns and political activism around our cause.
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 being 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 by love for our fellow citizens.