DonateWith help from supporters like you, Debra of America continues to provide programs and services to people with Epidermolysis Bullosa and their families, and to support EB research.
|The mounting cost of bandages is most often not covered by an EB family's health insurance.||86.4¢ of every dollar donated goes directly to EB patients, families, and research.|
The mission of debra of America is to improve the quality of life for all people living with EB, their families, and caregivers through 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
Our nurse 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 nurse will discuss treatment options, palliative care, wound care, and clinical trials in progress. Services are available in English and Spanish.
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.
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.
An internship at Debra of America allows you to work for an inspiring mission as you gain real-world experience at the only national non-profit dedicated to funding research and providing services and programs for those with Epidermolysis Bullosa. Our year-long program focuses on our annual events, programs and services, policy research, social media campaigns, communications and press, and fundraising.
National Registry of EB Medical Professionals
Debra’s EB nurses compile and update a national referral network of specialized physicians who are experts in the treatment of EB. Patients and families can tap into this resource by contacting the EB Nurse Educator.
New Family Advocate Program
When Debra learns of a newborn with EB, we send a care package of needed products and practical information regarding wound care, medical supplies and issues related to the care of an EB child. We also include items to comfort and celebrate the new baby. Parents have the option of receiving a day of hands-on training from an experienced wound care nurse.
Patient Care Conference
Debra hosts a biennial four day conference where EB families can come to meet with clinicians and researchers who specialize in EB. The primary investigators discuss ongoing or planned clinical trials, while clinicians inform about trends in EB care. Families reconnect with others and meet new families as well.
Resources for Families
Access the additional services and support that Debra 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 the Debra newsletter.
In partnership with Grace Peshkur's family and friends, debra of America created the Smile Fund. This program grants mini-wishes to EB patients who need some happiness. These smiles will not only benefit the butterfly child but will allow the family some memories they can keep close to their heart.
Wound Care Distribution Program
This program distributes wound care supplies to those who cannot afford them. The specialized, non-adherent bandages and other necessary supplies can have a retail cost in excess of $10,000 per month. In many cases, private insurance, Medicaid or Medicare does not cover the entire amount. The program aims to bridge these gaps in coverage, as well as support those without insurance.
Young Leadership Committee
This program aims to increase and promote EB awareness by training and mobilizing volunteers to educate others about the disease. It is an affiliate group of Debra of America, comprised of individuals 35-and-under who host and participate in Debra Supporter Led Events across the country and whose mission is to fundraise and spread awareness of EB.