DEBRA Ireland has a long history of driving and supporting research with the potential to improve the lives of people living with EB.Read More
We want to take time out to celebrate all the incredible women involved in fighting for those living with EB.
Rare shouldn’t mean…Ignored…Forgotten…Set aside…Abandoned.
Rare Disease Day takes place on the last day of February each year. But rare disease isn’t just a day. For the 300 million people worldwide living with rare disease, 500,000 of which live with EB, it’s every day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The first EB World Congress took place in London last month. 600 delegates from over 50 countries attended the sold out event.Read More