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.||89.4¢ of every dollar donated goes directly to EB patients, families, and research.|
We are often asked how research is funded at Debra. Debra of America contributes to an International EB Research Consortium that represents EB organizations all over the world. EB researchers and clinicians apply to the Consortium to fund therapies that can increase quality of life for EB patients and promising work toward a cure for EB. The applications are reviewed by an international Medical Scientific Advisory Board (MSAP). Two members of Debra’s Scientific Advisory Board sit on this prestigious panel. There are usually two rounds of applications annually with fifteen to eighteen applications each round. In the last round, five were awarded funding. The amount of the award depends on the quality of the proposal and the available funds for each round. The Consortium is rigorous in selection, reporting, and tracking grant outcomes. We believe this structure offers the best use of funds. It is objective, accountable, and dedicated to finding a cure for Epidermolysis Bullosa.
Current Research Priorities Include
- Advancing developments in gene therapy
- Promoting wound healing for those with EB
- Improving the management of EB through clinical research (click for current research trials)
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
- 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