Some pain isn’t easy to see. Alison Hyland will be the first to tell you that her EB isn’t as severe as what other people live with.
Read MoreAlison’s Story
News and Stories: Patients’ Stories
Leinster Rugby names DEBRA Ireland as a charity affiliate for December
This Christmas, Leinster Rugby and DEBRA Ireland are set to remember a brave young boy who passed away only a few weeks before he was due to lead the team out as a match day mascot.
Read MoreEmotional wellbeing for families during Covid-19
As part of the work we are doing with the team in Children’s Health Ireland, Dr Bronagh Kennedy (Senior Clinial Psychologist), has kindly put together some advice for families caring for a child or adolescent with EB.
Read MoreKathleena Clancy in The Irish Examiner
Kathleena Clancy’s parents knew she had the painful skin condition EB before they adopted her from Wuhan.
Read MoreClaudia Scanlon in The Irish Times
International Women’s Day
We want to take time out to celebrate all the incredible women involved in fighting for those living with EB.
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Meet the Clancy family from Cavan
Kathleena Clancy turned 3 in December. She was born with EB which means certain parts of her body can blister easily and her skin needs to be bandaged. Mum Tina spoke to Thomas Lyons from The Anglo Celt about Kathleena joining their family in 2018.
Read MoreRachel 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 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.
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