Loading....
Get Creative With Your Fundraising!
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.
W H Y H E L P?
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! 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.
W H A T I S E B?
Epidermolysis Bullosa (EB) is a group of rare disorders caused by a mutation in one of 18 genes. People with EB share the lifelong challenge of extremely fragile skin that blisters and tears from minor friction or trauma. The list of medical complications EB causes may be long and often requires multiple interventions from a range of medical specialists. There is no cure for EB but there are treatments that help alleviate some of the debilitating symptoms of certain types of EB. debra of America’s work led to the groundbreaking U.S. FDA approval of the first two treatments for EB in 2023 and one this year. To learn more please visit here.
W H A T I S D E B R A O F A M E R I C A?
Our mission is to improve the lives of those impacted by Epidermolysis Bullosa (EB) — “The Worst Disease You’ve Never Heard Of.” We integrate direct-to-patient programs and services, education, advocacy, close partnership with treatment developers, and research funding to foster meaningful change for those living with EB. Each year, debra of America spends an average of $1.5 million on direct-to-patient programs and services to provide immediate relief to thousands of families across the country.