Advocacy meetings and calls to fight for your rights

No one living with EB, caring for someone with EB, or bereaved by EB should struggle to get the support and services they need. We campaign to change policies that affect people’s lives so no one has to fight alone. We believe that anything we do should be those who understand EB, what it means to live with EB, care for someone with EB, or be bereaved by EB.

We want to make sure that the voices of people affected by EB are heard by decision makers on various topics related to what living with EB in Ireland is like now and what it should look like in the future. We will unite to make sure services for everyone with EB are prioritised at the highest level.