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Our Work

Recent publications...


ISMPP 2024 - patient research

Eye Journal - patient, caregiver and ECP research

Highlighting Rare Series: GPs
GP awareness - part 1 video

Primary care is often the first point of contact for many people with rare diseases. We surveyed 50 GPs to examine the current rare disease landscape in the UK, exploring awareness and confidence in relation to rare diseases.

Highlighting Rare Series: GPs
UK Rare Disease Framework Infographics

The UK Rare Disease Framework was introduced in 2021. We gathered views from UK GPs on the framework, including GP support needs and perceived challenges in implementation. 

Highlighting Rare Series: GPs
Digital tools and genomic testing video

What level of awareness and comfort do GPs have with digital tools and genomic testing in relation to rare disease? And how would they like to be supported to best leverage these tools and tests?

Yellow Insights

How we support, in a nutshell!

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