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Please support me in my efforts to raise money and awareness for debra of America, and the EB Community. Click the donate button on the top of the page or below to complete your donation. Every little bit helps us get closer to a cure for "The Worse Disease You've Never Heard Of."
I run for EB because ...
25,000 people struggle with EB in the US
75% of their bodies can be covered in agonizing wounds
$10,000 is the average cost per month for specialized bandages
7 surgeries per year are necessary for some with EB
22% of those born with EB in 2014 are no longer with us
That's why we count on the support of people just like you: Because the cost of doing nothing is too great.
Watch the video below to learn more about Asa, a sweet boy who sadly passed away from EB.
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. FDA approval of the first two treatments for EB in 2023.
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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© Copyright 2023, debra of America, All Rights Reserved | The Dystrophic Epidermolysis Bullosa Research Association of America, d/b/a debra of America is a registered 501(c)(3) tax exempt organization. | All Trademarks and Brands are Property of Their Respective Owners. debra of America does not endorse any drugs, tests, or treatments that we may report. This website is for informational purposes, always check with your physician before adopting any medical treatment. | EIN: 11-2519726
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Fundraiser First Name Fundraiser Last Name
Please support me in my efforts to raise money and awareness for debra of America, and the EB Community. Click the donate button on the top of the page or below to complete your donation. Every little bit helps us get closer to a cure for "The Worse Disease You've Never Heard Of."
I run for EB because ...
25,000 people struggle with EB in the US
75% of their bodies can be covered in agonizing wounds
$10,000 is the average cost per month for specialized bandages
7 surgeries per year are necessary for some with EB
22% of those born with EB in 2014 are no longer with us
That's why we count on the support of people just like you: Because the cost of doing nothing is too great.
Watch the video below to learn more about Asa, a sweet boy who sadly passed away from EB.
Organization Name
Org Address Line 1 Org Address Line 2
Org City, Org State Org Zip
Need help? Org Email
Fundraiser First Name Fundraiser Last Name
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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 support me in my efforts to raise money and awareness for debra of America, and the EB Community. Click the donate button on the top of the page or below to complete your donation. Every little bit helps us get closer to a cure for "The Worse Disease You've Never Heard Of."
I run for EB because ...
25,000 people struggle with EB in the US
75% of their bodies can be covered in agonizing wounds
$10,000 is the average cost per month for specialized bandages
7 surgeries per year are necessary for some with EB
22% of those born with EB in 2014 are no longer with us
That's why we count on the support of people just like you: Because the cost of doing nothing is too great.
Watch the video below to learn more about Asa, a sweet boy who sadly passed away from EB.
Organization Name
Org Address Line 1 Org Address Line 2
Org City, Org State Org Zip
Need help? Org Email