What do we do?

Our mission is to alleviate the suffering of Brazilian kids with Epidermolysis Bullosa, increasing their quality of life, whether through material and emotional support or through information and awareness.

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 so for the people living with a rare disease. Treatment is expensive, complicated, inaccessible for many and, in some cases, wholly absent, the results of which can be life-threatening for these patients.

Our goal is 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. We also help our families by providing emotional support and quality information.

Following are the two most important programs and projects we rely on in order to accomplish our mission.

Wound Care Distribution Program

Our Wound Care Distribution Program has been growing and improving over the years. Our focus is to provide top quality products for our 70 little butterflies. The supplies we currently donate covers all steps of keeping our kids skin well care for. From special lotions that relieve the itch (which can avoid new lesions), to the special foam dressings that covers the wounds (and do not stick to them), every product we donate was carefully selected and approved by our EB Counselor, Anna Carolina Rocha, an experienced Recessive Distrofic Epidermolysis Bullosa patient. Following are the products we currently donate:

Itch relief lotions: to avoid new wounds
Antiseptic: to clean the wounds properly
Ointments: to help on the healing process
Special dressings: to protect the wounds without causing damage and pain on its removal
Retaining nets: to hold the dressings in place and/or protect sensitive skin
Barrier creams: to protect the difficult to dress wounds and/or protect sensitive skin
Adhesive remover sprays: to remove adhesive from skin without causing damage
Soft silicon adhesive tape: to secure fixation of medical devices without causing damage to the skin
Nutritional supplements: to fight against anemia (for these we require a doctor's note)

From 2016 to the end of 2019, our Wound Care Distribution Program has distributed a total of 24.138 wound care supplies and nutritional Supplements! And with your help, this year we are hoping to increase 10% from last year and donate another 8.000 items.

Please help us reach our goal by donating here, or by buying supplies for us here.

Godmother Project

The Godmother Project came along at very early stages of our organization. A little after we started our Wound Care Distribution Program, we realized the families of our little butterflies not only needed the proper materials to care for their kids, but they also needed quality information on how to care for them. Information about Epidermolysis Bullosa in Brazilian portuguese was scarce then, and most of the families did not have access to good quality information. We were very lucky to meet Anna Carolina, who had extensive knowledge about the disease and treatment, and was willing to share her knowledge. We then decided to create a group of Godmothers that would be in direct contact with Anna Carolina and the families, in order to help providing the families, not only with supplies, but also with the vast knowledge our EB Counselor possesed.

Today, we count with 25 wonderful Godmother volunteers, whose 'job' is to provide emotional support to their EB families, as well as quality information on treatment. They also check in with their families on a regular basis in order to verify if they need more supplies so we can program to ship more to them.

We would like to take the opportunity to thank Anna Carolina for her support, and to thank each and everyone of our Godmothers for their love and dedication to our kids and our cause!

If you are interested in becoming one of our volunteers, please contact us at sos@sosebkids.com.