Whether you’re interested in participating in a race, organizing a bake sale, fundraising
on behalf of a loved one, or inviting friends to donate in lieu of accepting birthday gifts,
there are so many ways to help is fight EB!
Start your campaign today, because the cost of doing nothing is too great.
Each year, 200 children are born with EB in the United States, but every day EB children and families struggle with the physical, financial, and emotional burdens of the disease. And while encouraging research suggests a future cure and treatment options, EB families still need our help today!
Help debra of America support thousands of EB families across the United States & find a cure.
Your contribution helps debra of America provide free Programs and Services to the EB Community and allows us to fund groundbreaking EB research research that is already pointing towards a cure! Help us fight EB, because the cost of doing nothing is too great.
Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare connective tissue disorder with many genetic and symptomatic variations. All types of EB share the major symptom of extremely fragile skin that blisters and tears from the slightest friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. There is currently no cure or treatment for EB. Pain management, wound care, and preventative bandaging are the only options available. Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly.
There are about 25,000 people living with EB in the US. It occurs in every racial and ethnic group and affects both genders equally. For a more in-depth and comprehensive understanding of Epidermolysis Bullosa, please also check out debra of America’s explanation by clicking here.
What is debra of America?
Because the cost of doing nothing is too great. This axiom defines debra of America's mission and directs all that we do. We are dedicated to improving the quality of life for those living with EB. To achieve our mission, we do two things in parallel: we provide free programs and services to the EB Community in the US, and fund the most innovative research directed at symptom relief and a systemic cure.
In 2017 alone, our largest program, the Wound Care Distribution Program, sent over $1 Million worth of specialized bandages. That translates to over 108,000 pieces of wound care sent to families across the US. Our research funding identified the genetic basis of EB and supports the science, which is at the forefront of gene and stem cell therapy, RNA repair, protein replacement, and inhibition of squamous cell carcinoma.