At the beginning of June, The Future of Healthcare Committee published its Sláintecare report.
EB and The Future of Healthcare in Ireland
News Archives: Advocacy
A European clinical network will improve clinical care for EB
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 EB
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
Rachel and Casey in The Irish Examiner
Thank you so much to Rachel Connors, superstar mum to the incredible Casey, for sharing her story in today’s Irish Examiner.
DEBRA Ireland calls on politicians to become #ebaware
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