DEBRA believes the time is right to bring epidermolysis bullosa (EB) into mainstream research, funding, and education; to bring it to the attention of the world’s population and media.
Our charity was founded 40 years ago in the United Kingdom by Phyllis Hilton whose daughter Debra had EB – it was the world’s first EB patient support group. Since then, we have made great strides in advancing diagnosis and daily management. But, WE NEED TO DO MORE.
Our vision is a world where no one suffers from this painful genetic skin blistering condition. We fund pioneering research to find effective treatments and ultimately cures for EB, as well as provide care and support to improve the quality of life for individuals and families. The direction of research shows great promise, but EB is complex and the costs are high. With support, WE CAN DO MORE.
The EB World Congress in January 2020 will be the first global congress on EB, bringing together the world’s leading experts in EB research, clinical management, and the EB community. Sharing state-of-the-art knowledge across the key stakeholders will give guidance to the professionals involved and support the development of strategies for research, regulatory, funding, and healthcare.
This inaugural event (EB 2020) is being organised by DEBRA UK and supported by an alliance of more than 20 rare disease and dermatology organisations worldwide. This meeting WILL and CAN make a difference in the world of EB towards finding effectives cures and treatments and help raise awareness of the condition.
Please join us and take the time to come to London in January 2020 to be part of this landmark meeting.
Caroline Collins is the EB 2020 Congress Director and DEBRA UK’s Director of Research.