DEBRA Ireland has always prioritised the voices of EB individuals to provide the best support and make the greatest impact.
An EB Expert Panel was launched by DEBRA Ireland to help shape their support and research priorities. The panel includes EB individuals, their family members and family members who have lost a loved one to EB. The panel advises the DEBRA Ireland Research and Family Support teams.
In person workshops held last November was followed by an online version for those unable to attend the previous in person session. The workshop is intended to be run twice a year, allowing the panel to have their voice heard within various DEBRA projects, enabling Patient and Public Involvement (PPI) which in turn will assist in enriching DEBRA Ireland contribution to the EB community in Ireland and worldwide.
This allows the ever-changing needs of this community to be at the forefront of the team’s minds as they work towards improving the quality of life of those who live with EB in Ireland. “It was lovely to finally meet people, chat and talk about EB and the need of patients.” – a member of our wonderful EB Expert Panel. The Family Support Team recognises the far reaching physical, psychological, and social impact EB has on individuals and their families. The team will work collaboratively with the panel and focus on developing an Online EB Hub. This online platform will be for families to access information and support on EB with ease.
With the launch of the panel, DEBRA Ireland has revised its research priorities and redefined the direct patient impact scope.
More details can be found on the DEBRA Ireland website.