Rare Care

Transforming Rare Disease Research and Care
Partners: Cambridge University

The Challenge
Rare disease patients face delayed diagnoses, fragmented care, and limited influence over services.

Our Approach

  • Measured diagnostic timelines using real-world data, interviews, and focus groups

  • Trained and collaborated with peer researchers

  • Co-created tools, resources, and feedback systems for lasting impact

Our Impact

  • Ensured patient and public involvement at every stage

  • Delivered actionable insights for policy and service improvement

  • Strengthened care coordination and reduced inequalities

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