We are absolutely thrilled by the progress achieved by the EB expert panel since its launch last year and the incredible impact it has already had on our work and EB research.
Your perspective matters, whether you have EB yourself, are a family member of someone with EB or are bereaved by EB.
We are on a mission to make this impact even more significant, and for that, we need more voices to join the conversation.
As our third EB Expert Workshop approaches in just a few weeks, we invite you to join us and give it a try. You can register here.
If you are planning to attend, please bring along a friend or family member who knows a little bit about EB too. Our panel thrives on diverse voices and experiences, and the more people we can bring to the discussion, the richer the experience and the greater the outcomes.
Your contribution can make a profound difference in our ongoing efforts to advance EB research, advocacy and support.
At the moment, we are particularly looking for new members to join the panel who have lived experience of Dystrophic and Junctional EB, as well as those who have experienced the loss of a loved one to EB.
We feel these three groups are currently underrepresented in the panel and we would love to hear more about your experiences.
In saying this, if you have experience of EB simplex and would also like to join, please register as the more voices we have from all groups the better! Our aim is to ensure that every member of the EB community in Ireland has a platform to be heard.
Saturday, 7th October 2023, 1pm to 5pm (lunch 1pm – 2pm)
Grand Canal Hotel, Grand Canal Street Upper, Dublin, D04 X5X7