People with rare genetic conditions are ‘systematically ignored’ by NHS

Ali Reed, whose daughter Emma has Williams syndrome, a rare genetic condition thought to affect about one in 18,000 people in the UK. Photograph: The Guardian/handout

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.