ERN ERNICA

The European Reference Network for Rare Inherited Congenital Anomalies (ERNICA) was officially established in March 2017 and is one of 24 European Reference Networks co-funded by the European Union (Health Programme). ERNICA involves teams from 20 European hospitals from 10 Member States. Our network covers rare inherited and congenital digestive disorders, including gastro-intestinal disorders, which have in common early manifestation in life and the need for multidisciplinary care and long term follow-up. For these complex and rare diseases, pooling the available resources at European level is a necessity to spur advancements in care and treatment.

The following objectives are defined for the ERNICA network:

  • Promote initial care for patients via strengthened referral systems
  • Provide a resource-hub for patients with inherited and congenital digestive disorders and their families across Europe
  • Provide independent and high quality educational opportunities to medical, nursing and other healthcare professionals in inherited and congenital digestive disorders throughout Europe
  • Deliver high standards of care
  • Build capacity where there is lack of knowledge and infrastructure;
  • Interconnect healthcare professionals, scientists, patients and the public to improve quality of care;
  • Open a dialogue with policy-makers and national authorities to overcome existing regulatory barriers for the provision of cross-border care

The network activities in the first phase are aimed at setting up a steady referral network for patients with congenital digestive disorders and identifying best practices in our network related to standards of care, outcome measurement and training. The network activities are grouped under eight work packages; Management, Dissemination, Evaluation, Standards of Care, Training, Research, eHealth and Fetal medicine. This website will be used to share gained knowledge, latest news and upcoming events.