One of DEBRA Ireland’s core strategic objectives continues to be to lobby those responsible for healthcare spending decisions in Ireland to put EB at the top of their agenda. With your help, we make sure our EB families always have a voice.

EB representatives attend the launch of the EB outreach nurse report

Outreach Nurse Report

In october 2018, DEBRA Ireland, with the assistance of patient representatives and clinical experts, launched a report “identifying the Optimum Role and Function of an Outreach Nurse”. It was launched by Minister for State for Disabilities, Finian McGrath, and attended by numerous political representatives. The report supports the view that an EB Outreach Nurse Service has the potential to address many health care needs identified by patients and families with EB.

Lobbying for our families

In 2019 we are continuing to seek departmental and political support through our lobbying activities:

  • Make the EB Outreach Nurse a permanent role. Funding for this role is due to expire at the end of 2019.
  • To secure further funding to enable the appointment of two additional outreach nurses.
  • Ensure appropriate funding and resources are available for EB care packages at home

Head of Advocacy, Fiona Aherne with Minister Finian McGrath