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.
EB Connect | 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!
Our Programs & Services
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.
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.
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.
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?
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.
Mentorship Program
debra of America's Mentorship Program offers two separate opportunities for both those living with EB and parents/caregivers.
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.
Get Involved
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
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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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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