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
The theme for this year’s Rare Disease Day is research and comes with the tagline ‘with research, possibilities are limitless’. Continue reading
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
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.