#cysticfibrosis scandal: Race against time to fight disease

Cystic FibrosisOne in every 2,500 babies in Britain are born with Cystic Fibrosis (Image: GETTY)

And to help fund the fight, family and friends of CF patients will turn out for the London Marathon. In Britain one in every 2,500 babies is born with the genetic condition, which affects about 10,400 people in the UK. Their average life expectancy is 39. People with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of symptoms affecting the entire body. Orkambi, made by US drugs giant Vertex, is not routinely prescribed to NHS patients because of prolonged wrangling over the cost. The Express has been crusading for NHS England to strike a deal with Vertex. The firm refused the NHS's £500million offer last July.

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Melanie Sedgwick, 29, and 39-year-old James Algar are among those who will run the marathon on April 28 to raise money for the Trust, which helps those born with the condition to live long and healthy lives.

Beverley Burnham-Jones, head of community giving and events at the Trust, said: "Our marathon runners are incredibly inspiring.

"The thousands they raise will help fund our vital work in the fight against cystic fibrosis, from worldclass research to our campaign calling for life-saving drugs to be made available now on the NHS.

"Running the 26.2 miles

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