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Nitisinone has been approved for use after trials showed it can halt the progress of Alkaptonuria (AKU) , and provide hope for a pain free future for the 30,000 people who have the condition in the UK.
Julien Sireau was diagnosed with AKU 20 years ago.
His brother Daniel got the same diagnosis three years later.
Since then their father, Nick, has dedicated his life to campaigning and fundraising to help find a cure.
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