People with rare genetic conditions are ‘systematically ignored’ by NHS
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A recent report by Genetic Alliance UK reveals that the NHS is "systematically ignoring" the needs of over 3.5 million people in the UK living with rare genetic conditions. The study, based on a survey of 290 individuals, found that many patients face significant delays in diagnosis, with one in four waiting at least three years. Furthermore, only a small percentage of rare conditions have approved treatments available, and access to care coordination is limited. The report highlights concerns about the transition from pediatric to adult care, where GPs often lack familiarity with specific rare conditions, potentially leading to inadequate care. The charity emphasizes that while the NHS generally provides excellent care, those with rare genetic conditions are frequently underserved.
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AI-ExtractedRare genetic conditions affect more than 3.5 million people across the UK.
Only 5% of rare conditions have treatment available that has been approved and licensed.
One in four people had to wait at least three years for a diagnosis despite actively seeking NHS care.
Millions of people living with rare genetic conditions across the UK are being “systematically ignored” by the NHS and facing inadequate care.
Only one in about 30 GPs have heard of Williams syndrome.
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