The Journal of Haemophilia Practice (Dec 2023)

Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways

  • Gacser Zita,
  • Skouw-Rasmussen Naja,
  • Bourke Steven,
  • ten Ham Renske,
  • Hosszú Dalma

DOI
https://doi.org/10.2478/jhp-2023-0023
Journal volume & issue
Vol. 10, no. 1
pp. 155 – 163

Abstract

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The second series of workshops for the EHC Think Tank Workstreams on Access Equity and Future Care Pathways involved working towards consensus on addressing challenges to progress around achieving equitable access to care and shaping rare disease care pathways that meet patient needs while remaining practicable and affordable to healthcare providers. This report summarises workshop outcomes from these two workstreams, in which stakeholder participants identified a ‘guiding star’ determining the direction of ongoing focus, defined achievable ‘near star’ milestones, and enablers and constraints to achieving these.

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