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DEBRA Ireland is dedicated to driving and supporting research into effective treatments for EB.
DEBRA Ireland’s vision is to transform the lives of people with EB and their families. Driving research to create effective treatments for EB is essential to improve the quality of life of those living with the condition. Thanks to the backing of our supporters and donors, we are able to join the global efforts in fighting EB. Since 2007, we have played an active role in driving research into EB and have funded many research initiatives. Developments in research, through the support of DEBRA Ireland over the years, has brought EB treatments closer to a reality with many technologies now in clinical trial phase. We work closely alongside researchers, DEBRA International, people living with EB, clinicians and donors making an impact on behalf of our families by:
- Supporting national research into EB, through the UCD Charles Institute of Dermatology, and providing evidence to support advocating for better EB services.
- Advocating and supporting research for rare diseases in Ireland.
- Funding international research to understand EB and develop potential treatments.
- Communicating progress in research to our families living with EB.
- Driving the development of an Irish and international EB patient registry.
- Keeping the patients at our core by promoting patient and public involvement in EB research.
