Rare disease in UK primary care: why 'more education' isn't enough
26 February 2026
1 in 17 people will be affected by a rare disease in their lifetime. Most will wait years for a diagnosis. The default answer has always been that primary care needs more education — but is that actually true?
1 in 17 people will be affected by a rare disease in their lifetime. Most will wait years for a diagnosis and the default answer has always been that primary care needs more education. But is that actually true?
This article pulls together the latest research on what works, what doesn't, and what systemic changes are needed alongside education to make a real difference.
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