This year for EB Awareness Week, we held a briefing in Leinster House to launch a new report ‘Life with EB in Ireland’, hosted by Deputies Chris Andrews and Pauline Tully fromSinn Féin.
This report, produced by Debra and the University of Limerick, examines the impact of EB on people’s quality-of-life and details the significant challenges families face in managing this difficult condition.
As a result of our efforts to raise awareness, the issue of adequate funding for supports for people impacted by EB was the subject of two parliamentary questions, as well as being raised during a debate in the Dáil by Deputy Pauline Tully.
Deputy Tully spoke about the impact of EB on individuals and families and highlighted the experiences of two incredible EB advocates, Emma Fogarty and Liz Collins. She then made a case for increased resources to be ringfenced in order to ensure that people can access the supports they need.
Minister of State for Mental Health Mary Butler (Fianna Fáil) responded on behalf of the Government and promised to explore the issues raised within her own department.
While we are delighted to be the subject of discussion with the Dáil, we recognise that there is a lot more to do turn this into concrete actions for people impacted by EB, and we will continue our efforts to advocate for adequate funding and resources for EB.
For more information on our campaigns, visit debra.ie/our-campaigns/