Rare Disease Report

Advocacy Spotlight Debra of America

JULY 12, 2016
Andrew Black
The Dystrophic Epidermolysis Bullosa Research Association (debra) of America is a group dedicated to the support families struggling with  epidermolysis bullosa (EB). Debra of America helps to improve the quality of life for all people living in the United States with EB, including their families and caregivers by providing funding research for a cure for EB and free programs and services for EB patients. 

About Epidermolysis Bullosa 

EB is a rare genetic connective tissue disorder that typically manifests at birth or early childhood and for which there are no approved treatments. There are many genetic and symptomatic variations of EB, but all forms share the common symptom of fragile skin that blisters and tears from the slightest friction or trauma. Current standard of care consists of bandaging and bathing the open wounds to prevent infection and trying to manage patients’ pain. There are approximately 20,000-30,000 people living with EB in the United States, and 300,000-400,000 worldwide.

About Debra of America

Debra of America was founded in 1980 by Arlene Pessar and her son, Eric Lopez who was diagnosed with EB. Debra of America is a nonprofit organization whose primary focus is helping those affected by EB. When not much was known about EB, debra of America filled the large gaps in knowledge about the cause, diagnosis, treatment, and a cure for the rare disease. 
Some of the services debra of America provides to the EB community are:
  • EB Nurse Educator Program – provides information on treatment options, palliative care, wound care products, bandaging techniques, and clinical trials in progress.
  • The Wound Care Distribution Program - distributes wound care supplies to those who cannot afford them. The average value of a package is $1,300. The specialized, non-adherent bandages and other necessary supplies for EB care can have a retail cost in excess of $10,000 per month.
  • New Family Advocate Program – sending a care package containing the necessary products and practical information regarding wound care, medical supplies, and issues related to the care of a child with EB to families with new born EB patients.
  • Government Affairs Program – educating legislators about the importance of certain laws, regulations, and policies that will benefit those with EB
  • Legal Aid Program - giving families the information to help develop strategies that will allow you to get the services you need and deserve. 
  • Smile Fund - grants mini-wishes for people with EB for butterfly child or adult.
  • National Registry of EB Medical Professions - a national referral network of specialized physicians who are experts in the treatment of EB. 
Throughout its 35 years of establishment, debra of America has remained devoted to funding research toward a cure, while responding to the increased need to provide direct services to patients and their families. 
Rare Disease Report interviewed Amy Paller, MD, a clinician at the Lurie's Children Hospital of Chicago and chair, department of dermatology at Northwestern University Feinberg School of Medicine about a patient with EB’s typical doctor appointment.

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