CoRare

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NHS Problem

Over 3.5 million people in the UK live with a rare disease, yet it typically takes 5–8 years to reach a diagnosis. During this “diagnostic odyssey,” patients see an average of 10 clinicians and often undergo repeated, unnecessary investigations, creating significant NHS costs and frustration for both patients and clinicians. Once diagnosed, many patients remain isolated with limited access to specialist support or research opportunities. The lack of verified, longitudinal data also hinders care coordination and innovation. CoRare addresses this by creating a trusted, data-driven infrastructure that connects patients, reduces diagnostic delays, and supports more efficient, personalised NHS care.

Founder Story

CoRare was founded by an NHS cardiologist, a health-data scientist, and a former Coinbase and Nuance engineer who shared a mission to fix the rare-disease care gap. From the clinic, the team saw patients spending years searching for a diagnosis and facing isolation once finally diagnosed. Combining frontline NHS insight, data-science expertise, and deep technical experience, they built CoRare – a secure digital platform that connects verified rare-disease patients and transforms their lived experience into research-ready, ethical data. Together, the founders are uniting medicine, data, and technology to improve diagnosis and care for overlooked patient communities.


The Solution

CoRare is a secure digital platform built for the 3.5 million people in the UK living with rare diseases. Through partnerships with patient charities and NHS clinicians, CoRare connects verified patients in trusted online communities and enables them to share consented health data safely.

This data is transformed into structured, longitudinal datasets that support faster diagnosis, improved care, and research innovation. Designed by a team combining NHS clinical expertise, data science, and advanced AI engineering, CoRare is building the ethical data infrastructure that links patients, researchers, and industry to accelerate discoveries and improve outcomes across rare diseases.

Impact

CoRare aims to transform outcomes for the 3.5 million people in the UK living with rare diseases by:
  • Shortening diagnostic delays
  • Reducing patient isolation
  • Improving access to research and treatment.

Currently, rare-disease patients experience an average diagnostic delay of seven years, during which they see up to ten clinicians and often undergo repeated, unnecessary tests. By connecting verified patients through trusted charity partnerships, CoRare enables earlier data sharing, faster identification of diagnostic patterns, and improved coordination between specialists, potentially reducing time to diagnosis by 30–40%.

For the NHS, this translates into:
  • Fewer duplicate investigations
  • Reduced outpatient visits
  • Lower long-term care costs for misdiagnosed or unmanaged patients.

CoRare also supports research and industry partners by creating ethically consented, longitudinal datasets that accelerate clinical trial recruitment and real-world evidence generation.

Early pilots are expected to engage over 5,000 patients across multiple charities within the first year, with expansion to 50,000+ in three years. The intended impact is a scalable, sustainable model that delivers measurable improvements in patient quality of life, system efficiency, and the evidence base for rare-disease care, directly supporting NHS priorities in digital innovation, personalised care, and equitable access.