At the beginning of June, The Future of Healthcare Committee published its Sláintecare report.
There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”. Continue reading
The Programme for a Partnership Government and 32nd Dáil was published last week. We have summarised it to find out what it means for people living with EB. Continue reading
Thank you so much to Rachel Connors, superstar mum to the incredible Casey, for sharing her story in today’s Irish Examiner.
Press Release: For Immediate Release
10th February 2015
Would you deny this child hope?
This General Election, DEBRA Ireland are challenging their local candidates to become #ebaware because without awareness there is no funding, without funding there is no research, without research there is no cure and without a cure there is no hope. Continue reading