EAT is pleased to report that ERNICA (European Reference Network on Rare inherited and congenital diseases) with its focus of expertise on Rare-complex gastrointestinal diseases (including oesophageal atresia) has submitted its application to be a recognised European Reference Network. We are also pleased to be able to say that ERNICA’s Network Co-ordinator is Prof. Rene Wijnen of the Erasmus Medical Centre Rotterdam, who is a member of the EAT Medical Advisory Committee. At present the proposed network includes 20 hospitals across 10 countries (including several – Belgium, France, Germany, Italy, Netherlands and UK – with support groups who are members of EAT).
This application was made in response to the EU’s healthcare initiative to establish a number of reference networks which will be research and knowledge centres, each of which will focus on a specific groups of rare diseases. The involvement of patient support groups will be a key ingredient in the management of these networks and we are particularly pleased to advise that EAT Executive Board members Graham Slater and Anke Widenmann-Grolig are nominated members of ERNICA’s Advisory Board.
ERNICA’s application will now be subject to an evaluation and audit process. The outcome of this process is expected in the Autumn and all being well, ERNICA will be launched in early 2017. We will keep you updated on developments regarding this exciting initiative