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Brexit is threatening vital research that could save my sons lives

A Cambridge father who is battling to save his two sons from a devastating disease says Brexit is pu..

By admin , in Cambridge , at March 30, 2018

A Cambridge father who is battling to save his two sons from a devastating disease says Brexit is putting vital research at risk.

Nick Sireaus sons Julien, 17, and Daniel, 14, both have a rare condition called alkaptonuria, which they were born with.

It is a terrible disease, which affects about one in every 500,000 people, and it takes effect in adulthood, weakening bones and turning them black. The illness causes severe pain – and can lead to heart disease, kidney infection and osteoarthritis.

Dr Sireau quit his job in 2010 to work full-time on finding a cure and, alongside others, set up the AKU Society.

They identified a promising drug, called nitisinone, and formed a consortium of 13 organisations, including pharmaceutical companies and universities from across Europe.

Nick Sireau with his sons when they were younger

Together, they raised £6 million from the European Commission to fund clinical trials.

Depending on the results of their current trial, which will be available early next year, they hope to apply to the European Medicines Agency (EMA) for marketing authorisation across the continent. But Dr Sireau says that without a clear path on Britains future relationship with the EMA, the future for the potential treatment is uncertain.

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He said: “The boys were diagnosed with the condition soon after they were born. Their urine had turned red-black, which was a sign they had the disease.

“Wed been told by the doctors that there was nothing we could do, that we just had to enjoy the childrens childhoods and that later in life, when they got to young adulthood, they would start developing all these problems but there was nothing we could do about it.

“And we believed there probably was something we could do about it but it would just take time.”

Nick Sireau quit his job in 2010 to try to find a cure

He added: “If we do leave the European Union, I think it will potentially damage the alkaptonuria movement because we have been thinking on a European scale and if we want to do further trials on new treatments which are different and potentially better than nitisinone we would still need to think on a European scale.

“It is very important for me to be able to find a treatment for this disease because Julien is now 17, Daniel is aged 14, so they are getting closer to the years when the disease will really start affecting them.

“The clock is ticking and we need to get things done.”

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The familys plight has been highlighted the Brexit Health Alliances latest Brexit Bulletin podcast, which says: “By working in partnership, the EU and the UK have together achieved many research breakthroughs that have saved and improved countless lives. Only by multi-national collaboration is it possible to involve sufficient numbers of children and adults with rare and less common diseases in clinical trials.

“In the second phase of Brexit negotiations an environment that builds on this strong foundation and supports innovative medical research in the future must be secured.”

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