106 participants from 33 countries gathered in Salzburg, on 5-7 October 2012, for the inaugural meeting of EB-CLINET – the clinical network for EB centres and experts. Organised by the Academy of the EB House Austria, the meeting formalised the establishment of the European (and international) Reference Network for EB. Cumulatively, the centres participating in the meeting had over 6,600 patients with EB in their care.
Since a major objective of the meeting was to understand better the range of services and activities undertaken at the existing clinical centres, each EB centre or EB expert (in total 31 centres/experts from 26 countries), made a short presentation on their work. Participants reported on their approaches to diagnosis, patient care, training and research.
Whilst this first meeting inevitably had a strong emphasis on sharing the current situation in each country, there was consensus that EB-CLINET offers the opportunity to work collaboratively on a number of projects, including professional training, clinical practice guidelines, clinical trials and an international EB register.
A further meeting is planned for 17-18 September 2013, in Salzburg and thereafter, meetings will probably be held every two years in different locations. For a full report on the meeting click here.