NHS leaving some patients with rare diseases to ‘fall through the cracks’, damning report finds

The NHS is “not working” for people in the UK with rare diseases as they are left to “fall through the cracks,” a damning new report has claimed.

Nearly three in ten (30%) people with certain uncommon conditions say they are waiting for five years between symptoms starting and being diagnosed with their condition.

Many are still facing “poor care co-ordination” after their diagnoses, the report by the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) finds, alongside difficulties accessing information and support.

Geographical factors also make too big a difference, the authors add, with where people live making a drastic difference to the level of care they can expect to receive.

The report claims that the UK health system has had an “increasing focus” on major and common conditions, but people with these rare conditions are being left to “fall through the cracks”.

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Source: The Independent, 29 April 2025