Casey Connors (7) was born with recessive dystrophic EB. The worst form of EB you can live with. Mum Rachel spoke to the Irish Independent about how Casey copes with EB now that she has started school.
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
Maria and Barry spoke to The Irish Times about the heartbreak of losing two babies to EB but also the immense love they had for Lola and Luca and how they want to keep helping other families affected by EB.
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…
Last year we held our second family weekend in Barretstown, Co Kildare. Families from all over Ireland and the UK living with EB came together for a fun-filled weekend where they spent time with other families living with the condition.
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