Organisation of ERNICA

There are 20 European hospitals involved in ERNICA, from 10 member states. It is a multi-disciplinary network of highly specialised healthcare professionals. Patient representatives also play an active role in the network and its activities.

Each ERN has a coordinating healthcare centre. ERNICA is coordinated by Erasmus MC, Rotterdam. Prof. dr. René Wijnen is the coordinator and Dr. Tomas Wester is the deputy. Renée de Ruiter and Olivia Spivack are the project managers.

There are two diagnostic areas covered by ERNICA:

1. Malformations of the digestive system 

[With working groups for esophageal diseases, intestinal diseases, intestinal failure and gastroenterological diseases]

2. Malformations of the diaphragm and abdominal wall

Network activities:

The network engages in eight areas of work, which are applicable to both diagnostic groups. (Management activities, Dissemination activities, Evaluation activities, Standards of Care, Training, Research, eHealth and Fetal medicine)









Each diagnostic group is co-coordinated by two HCP members.

Diagnostic groups Coordinators Center
CDH-AWD Prof. dr. Dick Tibboel Erasmus MC Rotterdam
  Prof. dr. Lucas Wessel University Hospital Mannheim
Oesophageal malformations Prof. dr. Benno Ure Hannover Medical University
  Prof. dr. Frederic Gottrand Lille University Hospital
Intestinal diseases Prof. dr. Mikko Pakarinen Helsinki University Hospital
  Prof. dr. Jean-Pierre Hugot CHU Paris - Hôpital Robert Debré
Gastroenterological diseases to be decided  
Intestinal failure Prof. dr. Marja Boermeester AMC Amsterdam
  Prof. dr. Olivier Goulet CHU Paris - Hôpital Necker


All ERNICA activities are coordinated by one or two HCP members.  

Network activities Coordinator Center
Management and Dissemination Prof. dr. René Wijnen Erasmus MC Rotterdam
Evaluation Prof. dr. Tomas Wester Karolinska University Hospital
Standards of Care Dr. Gunnar Aksnes Oslo University Hospital
Training Dr. Janne Suominen Helsinki University Hospital
Research Prof. dr. Laurent Storme Lille University Hospital
eHealth Dr. Francesco Fascetti Leon University of Padua
Fetal medicine Prof. dr. Jan Deprest Univerity Hospital Leuven
  Dr. Alexandra Benachi GHU Paris Sud - Hôpital Antoine Béclère