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 Epidermolysis Bullosa (EB) by providing free programs and services and funding innovative research.

$2.4 Million

The dollar amount spent on direct-to-patient programs and services in 2019.

25

The number of ongoing research projects funded through DEBRA International.
EB Connect Logo

EBconnect.org | New Resource for the EB Community

Launched in July 2020, EBconnect.org is a private, online platform for those living with and working in Epidermolysis Bullosa (EB). Members can explore an interactive map and connect with others in their region and across the world, join specialized groups, engage directly with companies developing treatments, and access educational webinars on EB care, management, and research!    

About EBconnect.org

Our Programs & Services

Wound Care Distribution
This picture is of a table with wound care supplies for managing Epidermolysis Bullosa (EB).

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
This picture is of a family holding a baby with Epidermolysis Bullosa (EB).

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
This picture is of a mom and son with Epidermolysis Bullosa (EB).

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
This picture is of a family at the 2014 Patient Care Conference.

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
This picture is of a smiling girl with Epidermolysis Bullosa (EB).

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
This picture is of a volunteer helping a young child.

Friend2Friend Mentorship Program

We create meaningful matches between kids, teens, and young adults with Epidermolysis Bullosa (EB). Through support and friendship, Friend2Friend mentors are a positive force in their mentees lives.

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debra Care Conference
This picture is a group photo of 2016 DCC attendees.

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

2021 EB @ TPC Golf Classic 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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Mother holding child's hand. 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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Two friends at the DCC 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