Millions with rare genetic conditions are 'systematically ignored' by NHS

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.

- Tobi Thomas Health and inequalities correspondent

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.