Programs & Services
The mission of debra of America is to improve the quality of life for all people living in the United States with EB, their families, and caregivers through free programs and services while funding research to find a cure and treatments for Epidermolysis Bullosa.
For the Wound Care Distribution program, email woundcare [at] debra [dot] org.
EB NURSE EDUCATOR PROGRAM
The debra of America EB Nurse Educator is available by email or phone for EB families, the general public, and the professional community to answer questions and provide guidance. As EB patients experience secondary complications, the EB Nurse will discuss treatment options, palliative care, wound care products, bandaging techniques, and clinical trials in progress. The EB Nurse collects data over the life span of EB patients to enable debra of America to calculate the real burden of care in order to improve on any aspects of the program. The EB Nurse can also coordinate entrance into our other programs or make home visits, as needed. Services are available in English and Spanish.
WOUND CARE DISTRIBUTION PROGRAM
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. In many cases, private insurance, Medicaid, or Medicare do not cover the entire amount. The Wound Care Distribution Program aims to bridge these gaps in coverage, as well as support those without insurance.
NEW FAMILY ADVOCATE PROGRAM
When debra of America learns of a newborn with EB in the United States, we send 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. Also included in this package are items to comfort and celebrate the birth of their newest family member! Each package is valued at $1,200. Parents also have the option of receiving a day of hands-on training from an experienced wound care nurse.
GOVERNMENT AFFAIRS PROGRAM
We will be working on Capitol Hill and in state capitals around the country to educate legislators about the importance of certain laws, regulations, and policies that will benefit those with EB. We will need you to get involved with us when we are able to organize meetings with legislators so you can tell them how EB affects you.
LEGAL AID PROGRAM
We want to help you, and your families, best advocate for yourself when issues arise. For instance, has your insurance denied coverage or your local school board been unable or unwilling to support your IEP? We will give you the information to help develop strategies that will allow you to get the services you need and deserve.
THE debra CARE CONFERENCE (DCC)
Formally the Patient Care Conference (PCC). Every two years, debra of America invites those with EB as well as their families, advocates, and care providers to meet with and learn from academic researchers, organizations conducting research into treatments and a cure, and medical professionals who have developed expertise in particular areas of EB care. Bandage manufacturers and distributors attend as exhibitors to demonstrate their products and services to the EB Community. Most importantly, the Conference allows those with EB to meet new families and reconnect with others from around the country that share similar circumstances. Over 600 people attended debra of America’s 2014 Conference in Nashville, Tennessee. It was the largest gathering of people with EB in history.
RESOURCES FOR FAMILIES
Access the additional services and support that debra of America offers to people with EB and their families, from our Classroom DVD to a list of clinical trials accepting enrollments. You can also sign up to receive our E-Newsletter.
In partnership with Grace Peshkur's family and friends, debra of America created the Smile Fund in memory of Grace, a young child who passed away from Epidermolysis Bullosa. This program grants mini-wishes for people with EB. These smiles not only benefit the Butterfly Child or Adult, but they also create priceless memories.
NATIONAL REGISTRY OF EB MEDICAL PROFESSIONALS
debra of America's EB Nurse Educator compiles and updates a national referral network of specialized physicians who are experts in the treatment of EB. Patients and families can access this resource by contacting the EB Nurse Educator.
An internship at debra of America allows you to work for an inspiring mission as you gain real-world experience at the only national nonprofit dedicated to funding research and providing programs and services for those with EB. Our year-long or semester-long program focuses on our annual events, programs and services, policy research, social media campaigns, communications and press, and fundraising.