Organisation and structure
ERNICA has a governance structure that gives healthcare professionals and organisations involved in the care and research of scare inherited and congenital malformations the opportunity for continuous exchange of knowledge and best practices.
The ERNICA coordination office is based at Erasmus University Medical Center, Rotterdam, The Netherlands.
Coordinator: Prof. dr. René Wijnen
Project managers: Iris den Uijl, Sara Roman Galdran and Romee van Steekelenburg
ERNICA has a governance structure that gives healthcare professionals and organisations involved in the care and research of scare inherited and congenital malformations the opportunity for continuous exchange of knowledge and best practices. Exchange of best practices is ensured via both vertical (work streams and working groups) and horizontal organisational structures (work packages).
The work steams are divided into different working groups. The rationale for having these working groups is to allow for focused projects, and collaboration with patient support groups on a disease- specific level. Workstreams and working groups are co-led by ERNICA healthcare professionals and patient representatives where possible.
ERNICA coordination team
Malformations of digestive sytem
Work streams
Malformations of the diaphragm and abdominal wall
Disease-specific working groups
Fetal medicine (working group)
Transition and adult care (working group)
Implementation (central support team)
Nutrition (working group)
Transversal working groups
WP1: Coordination
WP2: Dissemination
WP3: Evaluation
WP8: Capacity builting and best practices sharing for Ukrainian competent authorities and healthcare units
WP9: Other activities for Ukrainian competent authorities and healthcare units
WP11: Networking
Cross-disease workpackages
ERNICA board
1 representative from each ERNICA (full) member Up to 6 patient representatives (/ePAG advocates)
Supporting partners
* Patient organisations registered in Europe that do not have a designated representative in the ePAG.
* Patient organisations registered and operating outside of Europe
* Individual patients or family members
* Social media-based patient support groups