Dr. Lara Cutlar, an EB researcher at the Charles Institute in UCD, recently traveled to the 75th Society of Investigative Dermatology meeting in Arizona and reported this to us….

Small numbers of patients, small amounts of research and small numbers of clinical experts make sharing an imperative in rare diseases. Simply put, Brexit is a block to sharing.

We marked Rare Disease Day at an event in Dublin Castle, with over 100 others on leap day – a rare day for rare diseases. Much progress has been made in the struggle to have the voices of those with rare conditions heard. There were more people present at the event than any such event in the past and there were positive updates on the new National Rare Diseases Office and the clinical programme for rare diseases. While there is lots of progress to celebrate, much frustration remains within the community however, in particular relating to very long waiting lists for genetic services and blocks in the access to rare disease medicines.

The Charles Institute of Dermatology in UCD is now a buzzing hive of research activity and, to our delight, much of that research is focused on EB. The commitment to EB shown by the researchers there is heart-warming and a number of them will be participating in the DEBRA Wicklow Mountains Challenge on Sunday!