We’ve come a long way since we were founded in 1988. Every year, we move nearer to closing the gap between what families living with epidermolysis bullosa (EB) need and what they receive.
Everyone diagnosed with EB in Ireland must get the best possible support at the right time, every time, with a clear care pathway. Anything less is a failure. And we won’t stop until this happens. All our projects, all our efforts combined will bring significant change. Just like the butterfly effect. That’s what we are all about.
;)
What a year it’s been. Thanks to you, our family support team was there for 134 households across Ireland – more than ever before. We danced, laughed and made memories at our biggest ever family weekend. And we stood together at Leinster House to launch the EB Butterfly Review, making sure the voices of people living with EB were heard right at the heart of government.
Every euro you gave, every event you ran, every item of clothing you wore inside out – it all added up to €2.6 million raised for the EB community. That generosity funded counselling sessions, hospital grants and special treats for siblings. It kept pioneering research moving closer to better treatments. And it means we can keep going, side-by-side with families, until the pain of EB ends.
This report is the story of everything we achieved together – and it belongs to every single person who made it happen. Thank you.
