DebRA of America is the only national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa and providing information and support for people with EB and their families.

In the year 2004, DebRA spent 86 cents of every dollar raised on the following programs and services:

RESEARCH

DebRA of America supports ground-breaking research into the causes and treatment of EB and has leveraged the allocation of millions of dollars in research funds. This funding had lead to uncovering the genetics of EB.

Current research priorities include:

• Advancing developments in gene therapy;
• Promoting wound healing for those with EB; and
• Improving the management of EB through clinical research.

DebRA has contributed to research in the following areas through its grants and other efforts:

• Developing prenatal testing for all genetically characterized forms of EB
  
  
• Creating the National EB Registry, the largest medical database of its kind in the world, which collects information from patients with EB, characterizes the many forms of this disease and determines the frequency of various manifestations of EB. Today, DebRA is a key funder of this project
  
  
• Providing support to the Dermatology Foundation in support of the AAD-awarded EB Research Fellowship
  
  
• Participating in peer-review panels that evaluate the most promising research being conducted world-wide
  
  
• Securing $2,000,000 in research funding from the Department of Defense, that was allocated to scientists nationwide
  
  
• Advocating for increased research funding through the National Institutes of Health

Support for Patients and Families

• EB Hotline -- staffed by a Nurse Educator who responds to more than 12,000 inquiries annually, and provides medical information, professional references and emotional support for people with EB and their caregivers.
  
  
• National Physician Referral Service -- connects people suffering with EB to qualified and knowledgeable health care professionals in their communities.
  
  
• New Family Advocate Program – staffed by a trained volunteer coordinator, this program serves the parents of newborns with EB in the hospital and in their homes, by providing practical, hands-on information regarding wound care, medical supplies and the range of issues related to the care of babies with EB. Other volunteers supply baskets of special clothing and baby care supplies to the families.
  
  
• National Patient Care Conference – a biennial conference that provides a forum for EB families to meet and learn about the latest research and medical advances in treating EB
  
  
• Wound Care Clearinghouse --- collects donated wound care supplies and distributes them free to EB patients in need.
  
  
• Family Crisis Fund --- provides emergency assistance to alleviate some of the financial burden of unreimbursed costs of medical supplies, other comforting aids, or procedures for families in need.
  Click here for criteria and application form.
  
  
• Eric Lopez Fund --- offers an opportunity for people with EB to achieve a higher level of independence and/or improve the activities of daily living.
  Click here for criteria and application form.
  
  
• “Currents” -- a quarterly newsletter distributed which includes up-to-date information about advances in EB treatment and connects EB patients and their caregivers to resources throughout the United States.
  
  
• Website - provides patients, caregivers and health professionals with accurate and up-to-date information on EB, as well as a community to connect with others with EB.
  
  
For information on these programs and services contact DebRA at staff@debra.or or at 866-DEBRA76.