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The European Haemophilia Consortium (EHC) Think Tank was established as a platform for system change to ensure the healthcare ecosystem remains effective and relevant for people with bleeding disorders and other rare diseases. Operating alongside traditional advocacy initiatives, it comprised a series of thematic workstreams in which multiple stakeholders explored and co-designed potential solutions for specific aspects of the healthcare system. This final report from the workstreams on Access Equity and Future Care Pathways summarises recommendations for system change and the actions needed to achieve critical goals.

System change addresses the fundamental causes of persistent, complex problems to achieve large-scale, sustainable solutions at multiple levels. Recognising the need for system change to ensure equitable access to healthcare for people with bleeding disorders and other rare diseases, the European Haemophilia Consortium (EHC) established a Think Tank to work alongside its traditional advocacy initiatives. The Think Tank has mobilised a broad range of healthcare stakeholders to identify challenges and co-create potential solutions through a series of thematic workstreams exploring specific aspects of the healthcare system. This paper reports on outcomes and learnings from the Registries and Patient Agency workstreams.

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.