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Fibrodysplasia ossificans progressiva (FOP) is one of the rarest and most disabling genetic conditions known. The University of Oxford is one of the few places in the world where this disease is being researched, with support from donations.

FOP causes bone to form in muscles, tendons and ligaments. As the disease progresses, movement becomes restricted by a ‘second skeleton’. It affects one in every two million people, with only 47 cases confirmed in the UK. People with FOP face a dramatically shorter life expectancy – the average is 40 years.‘It is one of the most devastating conditions known to man,’ says Christopher Bedford-Gay, whose six-year-old son Oliver was diagnosed with FOP a few years ago. ‘It is also frequently misdiagnosed as cancer, because it’s so rare, which often results in quite rapid progression of the disease through mistreatment.’ This is because any lesion, such as those caused by taking a biopsy or having surgery, can trigger excessive bone growth.

Read more (Oxford Thinking website)

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