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16.12.2016

The ERN-Skin is approved


The ERN-Skin is approved

Introducing a network that gathers experts’ knowledge and data in order to provide high quality and accessible healthcare to all EB patients in 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. On the 15th December 2016, the European Commission announced the ERN-Skin, along with 22 other rare disease ERNs. While there remains much to do to shape these networks into structures that start to have an impact on patient care, momentous is not too strong a word to use for the occasion.

Under the leadership of Prof. Christine Bodemer, the ERN-Skin includes 56 partners from 18 countries and is the largest of all the ERNs. It will initially focus on 8 groups of conditions and EB will feature very strongly.

With the support of EURORDIS, patients are at the centre 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. The skin ePAG representatives (including Avril Kennan as the DEBRA International representative and Evanina Morcillo Makow representing DEBRA Spain) helped to shape the ERN-Skin application and have been centrally involved in discussions on future governance and activities.

We would like to congratulate and thank all the clinical partners, all DEBRA representatives who have been involved in the many years of discussions and the staff of EURORDIS, who have played an instrumental role in getting to this point.

Dr Avril Kennan, DEBRA Ireland

The ERN-Skin ePAG hold a conference call