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European Reference Network on Rare inherited and congenital anomalies (ERNICA)

Project summary

ERNICA is a network of expert multi-disciplinary healthcare professionals from specialised healthcare providers across Europe (‘ERNICA members’).

ERNICA aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. Such health goals include:

  • Development of clinical skill
  • Increased patient access to high-quality expert care
  • Increased diagnosis-specific information available to healthcare professionals, patients and their families/carers

To achieve these aims, ERNICA works to meet the following objectives:

  • Clinician use of the Clinical Patient Management System (CPMS) to virtually discuss complex patient cases
  • Development and implementation of ERNICA-developed ‘standards of care’ (including clinical guidelines and consensus statements)
  • Initiation and conduction of multi-centre high-quality disease-specific research
  • Development of standardised outcome measures for standardised data collection
  • Development of training programmes and educational materials for healthcare professionals, patients and families/carers

Use of dissemination channels to publicise ERNICA activities and outputs to healthcare professionals, patients and families/carers across Europe and beyond


ERNICA seeks to reduce health inequalities across Europe by standardising practices and making high-quality care, information and resources accessible to healthcare providers, patients and their families/carers across Europe, regardless of where they are located.

More detailed information

Principal Investigator:

Prof. dr. Rene Wijnen

Role Erasmus MC:



Pediatric surgery

Project website:

Not available

Funding Agency:

3rd Health Programme