One of DEBRA Ireland’s core strategic objectives is to lobby those responsible for healthcare spending decisions in Ireland, to ensure that proposed policies are realistic, achievable and sustainable for people living with EB.

In 2017, we worked with EB Clinical experts and families living with EB to identify three advocacy priorities. We have made submissions to Government and met with numerous influential policy makers in an effort to ensure the following priorities are recognised:

  1. To secure a permanent position for the current EB Outreach Nurse- at present this role is only being funded for three years.
  2. To secure funding ensuring every patient with EB has an adequate care package – currently many people living with EB fall victim to the lack of adequate services available to them and their carers.
  3. To secure further funding to enable the appointment of two additional Outreach Nurses, to be based Crumlin and St James’ Hospitals.

On 25th October 2017, during EB Awareness week and EB Clinical experts and patient representatives, DEBRA Ireland made its first presentation to Oireachtas Members in Leinster House. Senator Colm Burke has been a long time champion of DEBRA Ireland and was instrumental in ensuring DEBRA had the opportunity to present in Leinster House.