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.
If you were tasked with improving EB healthcare all across the EU, where would you start? Well, you might begin by linking all the EB experts and centres around Europe. You would possibly then ask them to provide medical advice by video link, to patients who have no centre of expertise close by. You would probably also insist that the experts share their knowledge and the data they collect on EB with each other, in order to continually strengthen our approach to care.
This is exactly what the newly approved European Reference Network for rare and undiagnosed skin disease, ERN-Skin, will do and more. After many years of discussion and preparation, on the 15th December, the European Commission announced the ERN-Skin, which will have a strong focus on EB. While there remains much to do to shape this and 22 other rare disease networks into structures that will have an impact on patient care, momentous is not too strong a word to use for the occasion.
The ERN-Skin includes 56 partners from 18 countries and is the largest of all the ERNs. We are delighted that, having recently been designated as a National Rare Disease Centre of Expertise, the dermatology service in Our Lady’s Children’s Hospital, Crumlin, is included as a partner.
Patients and their representatives are also at the heart of all the new networks. Through the creation of European Patient Advocacy Groups (ePAGs), linked to each network, the ERNs will truly reflect the needs of patients. I’m honoured to be DEBRA International’s representative on the skin ePAG and intend to be very involved as the ERN-Skin evolves.
Dr. Avril Kennan, Head of Research and Advocacy