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Millions with rare genetic conditions are 'systematically ignored' by NHS
The Guardian
|February 24, 2026
Millions of people living with rare genetic conditions across the UK are being "systematically ignored" by the NHS and facing inadequate care, according to a report.
Rare genetic conditions, such as Williams syndrome and Duchenne muscular dystrophy, affect more than 3.5 million people across the UK. One in 17 people are affected by a rare condition at some point during their lives.
The research, published by the charity Genetic Alliance UK, surveyed 290 people living with a rare condition about their experience with the healthcare system.
One in four people had to wait at least three years for a diagnosis despite actively seeking NHS care, the survey found, while only one in 10 adults had a professional care coordinator to help manage appointments and followups.
Cette histoire est tirée de l'édition February 24, 2026 de The Guardian.
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