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.
There is very little clinical guidance on how to care for people with EB. We therefore need a way to capture the precious knowledge of healthcare professionals who have expertise in EB and also to base care on scientific evidence, whenever it exists. We do this through the development of clinical practice guidelines. We are delighted to announce that new EB clinical guidelines, on the topics of psychosocial issues, occupational therapy and podiatry, have been initiated. Continue reading
Over 30 people from across Europe, including clinical leaders from the EB community, DEBRA representatives and experts in patient registries came to Dublin in July to discuss EB patient registries. Working with the Irish Skin Foundation we are progressing plans for an Irish EB patient registry and a network of EB registries across Europe.