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.
EB (epidermolysis bullosa) is one of 6,000 rare diseases. There are 300 million people in the world living with a rare disease. Awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
“The one thing that gets me up every day and keeps me positive is knowing that there is something being done to fight the battle against EB. Research into better treatments and a possible cure for EB is happening worldwide and increasingly over the last few years there are more and more glimmers of hope.” Emma Fogarty, DEBRA Patient Ambassador.
DEBRA Ireland supports the 300 families in Ireland living with EB. We work on behalf of our families on a local and national level to raise awareness of EB and the wider rare disease community.