The recent Health Amendment Bill 2017 will ensure children with EB in receipt of Domiciliary Care Allowance will have easier access to a Full Medical Card. Continue reading
Some good news for parents of children with EB in Ireland.
Thank you to ESB
DEBRA Ireland, Liz Collins and Gary Scanlon wish to extend a huge thank you to ESB for the generosity shown to Claudia Scanlon in securing tickets for a number of Dublin GAA matches. Continue reading
Celebrating research in all its diversity: Rare Disease Day 2017
The theme for this year’s Rare Disease Day is research and comes with the tagline ‘with research, possibilities are limitless’. Continue reading
European rare skin disease network is born
A European Reference Network, focusing on rare skin diseases and with
strong Irish involvement has just been approved. Over time it will allow the sharing of expertise and data on EB with other experts around Europe. Continue reading
Awareness, awareness, awareness (and advocacy too)
As they say, without awareness there is no funding, without funding there is no research and without research there is no cure. You could add to this that there would also be no possibility of improving EB services in the community and no understanding by the public of what it is like to live with EB. This is why you will frequently here the words ‘awareness’, ‘advocacy’ and ‘lobbying’ used in the DEBRA office.
Continue reading