On 25th October 2017, during EB awareness week, DEBRA Ireland addressed Oireachtas members in the AV room of Leinster house.  Facilitated by Senator Colm Burke, a long standing champion of DEBRA Ireland,  Fiona Aherne, DEBRA Ireland’s Advocacy & Policy Officer chaired the event. Members heard presentations from Dr Fiona Browne, Consultant Dermatologist, Our Lady’s Children’s Hospital Crumlin, Rachel Reid, Mum of Alana who was born with EB, Liz Collins, DEBRA Ireland’s family ambassador and Mum of Claudia who was born with EB and Emma Fogarty, DEBRA Irelands patient ambassador.

There were two main aims for the day:

  1. An increased awareness of EB and the needs of people living with EB among Ireland’s Policymakers.
  2. To gain cross party political support to create a more sustainable EB outreach nursing service. Read our request in its entirety here

Nationwide families living with EB made contact with their local representatives to encourage attendance on the day. The presentation was a great success and we have since received commitment from numerous Oireachtas members to assist in furthering our request.