What Is debra of America and What Does It Do?

Updated

debra of America is a national nonprofit organization dedicated to improving the lives of people impacted by Epidermolysis Bullosa (EB). It serves individuals and families living with EB in the United States through free direct-to-patient programs, education, advocacy, partnership with treatment developers, and research funding. If you or someone you care for has EB, the organization's practical support programs are the most directly useful part of what it does.

What EB Is

Epidermolysis Bullosa is a rare connective tissue disorder with many genetic and symptomatic variations. All forms share the same prominent symptom: extremely fragile skin that blisters and tears with any friction. The organization describes EB as painful, rare, debilitating, genetic, isolating, pervasive, agonizing, expensive, and complex — and notes it is sometimes called "The Worst Disease You've Never Heard Of."

What debra of America Does

The organization integrates several kinds of work:

  • Direct-to-patient programs and services — free practical support for individuals and families
  • Education — information for patients, families, professionals, and the public
  • Advocacy — helping people navigate systems that affect their care and daily life
  • Partnership with treatment developers — working alongside those developing EB treatments
  • Research funding — supporting the search for a cure

Programs and Services

Program What it provides
Wound Care Distribution Bandages, dressings, ointments, and more, distributed free of charge to individuals and families with EB in the United States
EB Nurse Educator Phone and email access to an EB Nurse Educator for questions and guidance — available to individuals with EB, family members, the professional community, and the general public
New Family Advocate A full support system for parents and caregivers of a newly diagnosed child, including a free care package with wound care products, age-appropriate practical items, and educational information
Legal Aid Tools and guidance for self-advocacy and family advocacy — for example, when health insurance denies coverage or a local education system does not provide needed assistance to a child
Smile Fund Mini-wishes granted to bring joy to those living with EB; one winner is selected from a pool of applicants each month
Mentorship Mentorship support for those affected by EB
debra Care Conference A gathering for the EB community

Verifiable Results

Two figures stand out from the organization's own reporting:

  • $1.5 million — the average dollar amount spent each year on direct-to-patient programs and services
  • 3 FDA-approved treatments — debra of America's work has led to the historic U.S. FDA approval of three treatments for EB in three years

How to Get Involved or Stay Informed

The site offers a way to subscribe to emails for updates. You can also make a donation to help fund research for a cure. If you are seeking support rather than giving it, start with the program that matches your situation — wound care supplies, a new diagnosis, insurance or school issues, or simply a question for the EB Nurse Educator.