There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”. They will help improve care through faster diagnosis, the sharing of clinical expertise, providing opportunities for research etc.
Under the leadership of Prof. Christine Bodemer, an application for an ERN focused on skin, ERN-Skin, has been submitted. The network includes 56 partners from 18 countries, including Ireland, and is the largest of all the proposed ERNs. It will initially focus on 8 groups of conditions, one of which is EB, and EB features very strongly throughout the application.
The ERN Skin proposal is still going through the assessment process but speaking at the DEBRA Congress 2016, Christine Bodemer stated that she hopes the official approval of the ERN skin will happen at the end this year.
With the very valuable support of Eurordis, patient involvement is a strong feature of the ERN. Avril Kennan of DEBRA Ireland represents DEBRA International on the Patient Advisory Group (ePAG) where she is joined by Evanina Morcillo Makow of DEBRA Spain. Many of the activities lead by DEBRA International, including the development of clinical practice guidelines and the development of a registry will be important in the success of the ERN Skin.