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…
Read MoreOne of DEBRA Ireland’s core strategic objectives continues to be to lobby those responsible for healthcare spending decisions in Ireland to put EB at the top of their agenda. With your help, we make sure our EB families always have a voice.
EB representatives attend the launch of the EB outreach nurse report
One of DEBRA Ireland’s core strategic objectives is to lobby those responsible for healthcare spending decisions in Ireland, to ensure that proposed policies are realistic, achievable and sustainable for people living with EB.
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At the beginning of June, The Future of Healthcare Committee published its Sláintecare report.
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There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”.
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