We want to take time out to celebrate all the incredible women involved in fighting for those living with EB.
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International Women’s Day
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News and Stories: Research
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Rare Disease Day 2020
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.
Gathering of the worldwide EB community – EB World Congress 2020
The first EB World Congress took place in London last month. 600 delegates from over 50 countries attended the sold out event.
Read MoreBreakthrough EB research happening in UCD
We are getting closer to a treatment for EB. A team of Irish gene therapy researchers have made a breakthrough in the search for a cure for one of the worst strands of EB. Read about it in the Independent.ie
Read MoreEB Week as seen through the eyes of DEBRA staff
In October 2013, Harry Styles tweeted his butterfly tattoo with the following message, “I released my butterfly for EB Awareness Day. Join me.” 180,000 retweets later, EB Awareness Week was born. We asked DEBRA staff why EB Awareness Week is so important…
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