Title: Head of Fundraising & Marketing, DEBRA Ireland
Read MoreNews and Stories: Fundraising and Events
Rachel and Casey Connors in the Irish Independent
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.
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 MoreThe heartbreak of losing two babies to EB.
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.
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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