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European Reference Networks: challenges and opportunities.

Birute Tumiene1,2, Holm Graessner3,4,5, Irene Mj Mathijssen6,7

  • 1Institute of Biomedical Sciences, Faculty of Medicine, Vilnius University, Vilnius, Lithuania. tumbir@gmail.com.

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Summary

European Reference Networks (ERNs) face challenges in governance, funding, and integration. Addressing these requires pan-European collaboration for rare disease (RD) patient needs.

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Area of Science:

  • Rare disease research and healthcare policy
  • European public health initiatives
  • Cross-border healthcare collaboration

Background:

  • European Reference Networks (ERNs) were established to address rare disease (RD) challenges requiring pan-European solutions.
  • Despite being in the deployment stage, ERNs face significant obstacles hindering their full potential and daily operations.

Purpose of the Study:

  • To identify and analyze the key challenges impacting the functioning and sustainability of European Reference Networks (ERNs).
  • To highlight the necessity for innovative, collaborative solutions involving multiple sectors and stakeholders to overcome these obstacles.

Main Methods:

  • Analysis of ERN operational status and identified challenges in 2021.
  • Review of governance, regulatory, funding, and integration issues.
  • Assessment of the impact of external factors like Brexit on collaboration.

Main Results:

  • Key challenges include governance, regulation, legal status, funding, national integration, Brexit's impact on UK collaboration, research exploitation, human resources, patient involvement, and digital ecosystem positioning.
  • These unresolved issues threaten the long-term sustainability of ERNs and their capacity to meet rare disease patient needs.

Conclusions:

  • Overcoming ERN challenges necessitates bold, innovative, pan-European, multi-sectoral collaboration.
  • Coherent decisions from national and European authorities, aligned with EU values, are crucial for ERN success and rare disease patient care.