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.
We held our family Christmas party in December in the Clayton Hotel, Cardiff Lane, who once again pulled out all the stops to help create a really lovely day for our families.Read More