CONCORD2

Consultancy in Coordinated Care for Rare Diseases Partners: NIHR, patients and carers, healthcare professionals

The Challenge
Rare disease patients often require care from multiple professionals across different locations, leading to fragmented care and reduced quality.

Our Consultancy Approach

  • Co-chaired CONCORD2 study, building on the original CONCORD research

  • Advised on study design, evidence review, and methodology

  • Facilitated patient, carer, and professional engagement through interviews, focus groups, and surveys

  • Supported policy recommendations, including cost and value-for-money assessments

Our Impact

  • Identified effective models of care coordination
  • Informed NHS policy and future rare disease care models
  • Enabled patients and carers to influence research and service design
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