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ERNICA aims to facilitate and foster research initiatives across Europe and stimulate multi-centre collaboration. 

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The Scientific Commitee 


To provide overview of ongoing research, promote and facilitate research collaboration between ERNICA members and partners in order to enhance rare disease research.​


  • Creating an overall research strategy 2022-2027​

  • Tracking research activities (using the research survey overview)​

  • Actively search for potential grants (assisted by Research & Development Erasmus)​

  • Stimulate collaboration member and partner centers​

  • Facilitate workstream meetings​

  • Assess if overall support can be provided (e.g. Data Sharing Agreement)​


Roel Bakx  (Chair) - Amsterdam UMC - NL

René Wijnen (ERNICA coordinator) - Erasmus MC - NL

Beverley Power - CDH UK - patient rep - UK

Carmen Mesas Burgos - Karolinska University Hospital - SE

Mikko Pakarinen - Helsinki University Hospital - FI

Jan Deprest - UZ Leuven - BE

Tomas Wester - Karolinska University Hospital - SE

Frederic Gottrand - CHRU Lille - FR

Piergiorgio Gamba - AOP Padua - IT

Alberto Sgro - AOP Padua - IT

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