Our seven strategic objectives reflect the three areas where progress must keep growing – EB services, advocacy, and research – and the four areas of our organisation we must strengthen to achieve our ambitions – support for our people, fundraising, communications, and impact measurement.
We’ve come a long way since we were founded in 1988. Back then, a group of determined parents came together with one goal: to improve life for everyone affected by EB. They wanted to make sure the best medical, psychological and community care was always available – just as we do today.
Jump forward to today and our work now encompasses advocacy, research and a huge range of support for patients, families and carers. Our support team criss-crosses the country, visiting patients at home and providing grants to help families cope with the many challenges of EB. All this supported by an incredible community of donors. But while we have achieved so much together, we still have so much to do.
Care for people living with EB must keep improving, with more customised support and a greater focus on EB’s emotional impact. Research must continue to hunt for answers that can transform support and deliver treatments now. Everyone diagnosed with EB in Ireland must get the best possible support at the right time, every time.