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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(Infographic created by FIENDISH.com)

Epidermolysis Bullosa (EB) is a group of rare genetic skin conditions, which is characterised by extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.

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In the days before Alana was due to start pre-school her dad Greg, Caroline (Alana’s care assitant) and I went to meet her new teachers to discuss EB. We also checked the toys, removed anything unsuitable, checked chairs, toilets, outdoor area, etc. I had her new school jumper made into a V-neck so it can be easily put on/off without causing blisters. I covered any seams that could potentially cause any friction. I also dyed t-shirts to match the uniform as she cannot wear the polo shirt and panicked there was lots of panicking.

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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

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Debra Ireland has had a dedicated resource to drive research into better treatments and ultimately a cure for people living with EB for over ten years. I joined the team at Debra Ireland as Research Manager just over a year ago to do just this. My role is very varied covering many areas of research including:

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