The current COVID-19 pandemic has led to uncertainty and questions for all of us. Our colleagues in DEBRA International have produced an information booklet on COVID-19 for the EB Community.
Read MoreCOVID-19 Information Booklet
News and Stories: Advocacy
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.
EB 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…
Read MoreAdvocacy & Awareness
One 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
Advocacy & Awareness
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.
Read MoreEB and The Future of Healthcare in Ireland
At the beginning of June, The Future of Healthcare Committee published its Sláintecare report.
Read MoreA European clinical network will improve clinical care for EB
There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”.
Read MoreThe Programme for a Partnership Government and EB
The Programme for a Partnership Government and 32nd Dáil was published last week. We have summarised it to find out what it means for people living with EB.
Read MoreRachel and Casey in The Irish Examiner
Thank you so much to Rachel Connors, superstar mum to the incredible Casey, for sharing her story in today’s Irish Examiner.
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