Epidermolysis Bullosa (EB) is painful rare debilitating genetic isolating pervasive agonizing expensive complex

Epidermolysis Bullosa (EB)—"The Worst Disease You've Never Heard Of" —is a rare connective tissue disorder with many genetic and symptomatic variations. All forms share the prominent symptom of extremely fragile skin that blisters and tears with any friction. Learn more

Because the cost of doing nothing is too great.

It's an axiom that defines debra of America's mission and directs all of our actions. We are dedicated to improving the quality life of all people living with EB by providing free programs and services and funding innovative research.

$3 Million

The dollar amount spent on direct-to-patient programs and services in 2018.

25

The number of ongoing research projects funded through DEBRA International.

EBconnect.org | New Resource for the EB Community

Launched in July 2020, EBconnect.org is private, online platform designed specifically for those impacted by EB, their family members, researchers, medical professionals, and industry partners. It is the home of the 2020 Virtual debra Care Conference (DCC), and it accessible completely free. Members can explore an interactive map and connect with others in their region and across the world, join specialized groups, engage directly with researchers, and access educational webinars on EB care, management, and research!    

The 2020 Virtual debra Care Conference (DCC) will take place from August through the end of EB Awareness Week in October. More info here.

Learn more about EBconnect.org

Our Programs & Services

Wound Care Distribution
Wound Care

Wound Care Distribution Program

debra of America distributes wound care supplies, free of charge, to individuals and families with EB in the United States. Supplies include bandages, dressings, ointments, and more. 

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EB Nurse
EB Nurse

EB Nurse Educator Program

Our EB Nurse Educator is available by phone and email to answer questions and provide guidance to individuals with EB, their family members, the professional community, and the general public.

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New Family
New Family

New Family Advocate Program

We provide a full support system to the parents and caregivers of a newly diagnosed child with EB, including a free care package with a wide range of wound care products, age-appropriate practical items, and educational information.

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Legal Aid
family

Legal Aid Program

We provide tools and guidance to help you advocate for yourself and your family when issues arise. For example, has your health insurance denied you coverage, or your local education system not provided your child with the assistance he/she needs? 

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Smile Fund
Smile Fund

Smile Fund Program

We fulfill mini-wishes with the goal of bringing joy to those living with this taxing disease. One Smile Fund winner is selected from a pool of applicants every month.

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debra Care Conference
DCC

debra Care Conference (DCC)

UPDATE! The DCC is going virtual this year! Click below for more information.

This multi-day biennial conference is designed specifically for EB families and the professional community to access the best information, discover new ideas, and connect with other EB families from all over the country.

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Get Involved

Golf event Attend an Event

Have a good time for a great cause! Check out our upcoming events—both intimate and large—that take place all throughout the year and across the country. 

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donate Donate

A gift from you directly impacts all people living with EB, by providing them with crucial programs and services and funding the most innovative research directed at symptom relief and a cure.

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fundraise Fundraise

Fuel our mission and support the EB Community with our easy-to-use DIY Online Fundraisers! Set up your personalized, online fundraising page today to get started.

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Current Clinical Trials