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Please join me in raising funds and awareness for debra of America and the EB Community. Every donation, big or small, brings us one step closer to a cure for The Worst Disease You've Never Heard Of. Click the donate button at the top or bottom of the page to contribute.
I run for EB because...
25,000 people in the U.S. live with EB
Up to 75% of their bodies can be covered in painful wounds
$10,000 per month is the average cost of specialized bandages
Some require 7 surgeries per year just to survive
22% of babies born with EB in 2014 are no longer with us
This is why your support matters, because the cost of doing nothing is far too great.
Watch the video below to learn about Asa, a brave boy who lost his battle with EB.
Thank You For Helping Me Make a Difference!
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. 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.
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.
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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 raising funds and awareness for debra of America and the EB Community. Every donation, big or small, brings us one step closer to a cure for The Worst Disease You've Never Heard Of. Click the donate button at the top or bottom of the page to contribute.
I run for EB because...
25,000 people in the U.S. live with EB
Up to 75% of their bodies can be covered in painful wounds
$10,000 per month is the average cost of specialized bandages
Some require 7 surgeries per year just to survive
22% of babies born with EB in 2014 are no longer with us
This is why your support matters, because the cost of doing nothing is far too great.
Watch the video below to learn about Asa, a brave boy who lost his battle with EB.
Organization Name
Org Address Line 1 Org Address Line 2
Org City, Org State Org Zip
Need help? Org Email