ERNICA

ERNICA is the European Reference Network for rare inherited and congenital digestive disorders, including gastro-intestinal disorders. These disorders manifest early in life and require multi-displinary care and long term follow up. Many individuals with a rare inherited and congenital digestive disorder across Europe may struggle to get a diagnosis or treatment. Reasons for this may include: a lack of clinician awareness and knowledge of the treatment options, limited information available for both patients and healthcare professionals and/or an absence of professional skill in diagnosing and treating these rare or complex conditions.

ERNICA seeks to facilitate cooperation between multidisciplinary experts across Europe to support the provision of high quality care. 

The network seeks to:

  • 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;
  • Connect 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