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Welcome to Fundraiser First Name's Fundraising Page
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Please join me in supporting debra of America and the EB community by helping raise both funds and awareness. Every donation, no matter the amount, moves us closer to a cure for “The Worst Disease You’ve Never Heard Of.” You can contribute by clicking the donate button at the top or bottom of this page.
I run for EB because…
25,000 people in the United States are living with EB
Up to 75 percent of their bodies can be covered in painful wounds
The average cost of specialized bandages is $10,000 per month
Some individuals require up to seven surgeries each year just to survive
22 percent of babies born with EB in 2014 are no longer with us
Your support truly makes a difference, because the cost of doing nothing is simply too high.
Thank You For Helping Me Make a Difference!
What is EB?
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. As of 2025, three therapies have been approved by the U.S. Food & Drug Administration marking a historic shift in the landscape of care and a powerful step forward for individuals and families affected by this devastating disease. To learn more please visit here.
What is debra of America?
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.
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Thank You!
Thank you for your generous donation. Please share my fundraiser with your friends, and come back to this page to see updates on my progress.
Fundraiser First Name Fundraiser Last Name
Please join me in supporting debra of America and the EB community by helping raise both funds and awareness. Every donation, no matter the amount, moves us closer to a cure for “The Worst Disease You’ve Never Heard Of.” You can contribute by clicking the donate button at the top or bottom of this page.
I run for EB because…
25,000 people in the United States are living with EB
Up to 75 percent of their bodies can be covered in painful wounds
The average cost of specialized bandages is $10,000 per month
Some individuals require up to seven surgeries each year just to survive
22 percent of babies born with EB in 2014 are no longer with us
Your support truly makes a difference, because the cost of doing nothing is simply too high.