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

Leading nonprofit supporting people living with Epidermolysis Bullosa (EB).

debra of America is a national nonprofit organization dedicated to improving the lives of people with Epidermolysis Bullosa (EB) through supportive programs and funding the most innovative research for treatments and a cure. Explore further to learn how we help those with EB and their families and how you can get involved in our mission.

$1.7 Million

The dollar amount spent on direct-to-patient programs and services in 2022.

U.S. FDA-Approved Treatments

debra of America's work has led to the historic U.S. FDA approval of the first and second treatment for Epidermolysis Bullosa (EB).

Our Programs & Services

Wound Care Distribution
Support for Epidermolysis Bullosa

Wound Care Distribution Program

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

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EB Nurse
Support for Epidermolysis Bullosa

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
Support for Epidermolysis Bullosa

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
Support for Epidermolysis Bullosa

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
Support for Epidermolysis Bullosa

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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Mentorship
Support for Epidermolysis Bullosa

Mentorship Program

debra of America's Mentorship Program offers two separate opportunities for both those living with EB and parents/caregivers.

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debra Care Conference
Support for Epidermolysis Bullosa

debra Care Conference (DCC)

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

Support for Epidermolysis Bullosa 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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Support for Epidermolysis Bullosa Donate

A gift from you directly impacts all people living with Epidermolysis Bullosa (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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Support for Epidermolysis Bullosa 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