On Monday Sept 7th 2015 I was delighted to attend the Europlan II meeting in Dublin. This meeting focused on the implementation of the National Rare Disease Plan and gave me some insight into the long, and sometimes winding, journey to this point. In attendance was a group of highly intelligent, goal-focused and passionate professionals, family members and patients, all unified in their ambition to see progress. The speakers included our very own Avril Kennan, Head of Research at DEBRA Ireland who has been involved since the early commitment to develop the National Plan was given.

One of our great hopes in recent years is that a Shire Pharmaceuticals programme, to develop a protein replacement therapy for a severe form of EB, will be a success. Unfortunately we have to report that Shire have hit a bump in the road.

Working closely with our colleagues in DEBRA International, we have recently initiated something new, which is in keeping with our ethos of ensuring that people living with EB are at the heart of all we do. For the first time, we have brought the ‘patient voice’ into decision-making around which areas of EB research to fund.

DEBRA Ireland has embarked on funding an exciting new research project with big potential to make a difference to the lives of people with EB.