The Medical Research Council and the National Institute for Health and Care Research recently published a Rare Diseases Research Landscape Project Report.

This comprehensive report presents an overall picture of the rare disease research that has taken place across the UK over a 5-year period, including research related to EB, which was ranked 9th in terms of total number of research project awards out of the top 30 rare diseases covered in the report.

Prior to the Rare Diseases Research Landscape project there was no clear overall picture of what rare disease research was taking place, where it was happening or who it was funded by. This report, which presents the rare disease research funded in the UK between 2016-2021, represents a major step forward in being able to define, identify and classify rare disease research and this improved understanding of the rare disease research landscape should support future policy decisions on rare diseases, including how to invest in rare disease research.

Commenting on this new report, DEBRA Director of Research, Dr Sagair Hussain said:

We welcome this report, and the improved awareness and understanding it provides of the research that is taking place within the wider rare disease landscape. We hope that with improved visibility this may lead to possible synergies and opportunities to work together with other organisations within the rare disease space to collectively achieve our goals.