There is currently no treatment or cure for EB. Each year brings us closer to that desperately needed treatment however, and the last few years have seen particularly good progress.
- Our patients are closer to a cure than ever through the DEBRA International research programme into gene therapy, protein replacement therapy and bone marrow transplant (see our section on understanding clinical research to see what testing in patients entails)
- DEBRA Ireland maintains the EB Care Register of EB patients in Ireland. This captures detailed information about EB which is vital for researchers to develop therapies
- A state-of-the-art dermatology research centre at UCD now houses an EB Research Programme investigating gene therapy treatments for wound healing
While we wish that treatments for EB were in the immediate future, it is heartening that some of the best researchers in the world are working relentlessly to understand more about EB and to develop approaches to treat it. At the moment, no-one is sure which of the many treatment approaches will prove most successful and so DEBRA International and DEBRA Ireland support research in many different areas. In fact, ultimately, it is likely that different forms of EB, and different aspects of the condition, will need a variety of treatment types.
In this short video we asked six of the world’s experts on EB research what they think the future holds.
For more in-depth information on EB research world-wide, please see the DEBRA International website.
We encourage you to contact the DEBRA Ireland Research Manager, Avril Kennan, by phone or email (firstname.lastname@example.org), to have any questions you may have answered or just for a general chat about EB research.