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.