No-deal Brexit 'could risk lives of 4,000,000 Brits with rare diseases'

The health of four million patients with rare diseases could be put at risk if Britain fails to negotiate a deal with the European Union, top doctors have warned.

Around one in 17 people in the UK live with a condition that affects fewer than one in 2,000 people.

But their treatment now hangs in the balance as Boris Johnson warned a no-deal Brexit is ‘very, very likely’.

Leaving the EU without a deal will see the UK excluded from vital networks established to improve care and enable collaboration on diseases which require highly specialised diagnosis and treatment.

This will ‘diminish our ability’ to provide the best care for millions of children and adults with complex conditions, clinicians fear.

It could also mean Britain has reduced access to clinical trials and funding.

A group of leading medical experts outlined their concerns about being denied access to the 24 virtual ‘European Reference Networks’ (ERNs) in a letter to medical journal The Lancet.

Co-author of the letter, Dr Marc Tischowitz, from the University of Cambridge, said: ‘Rare diseases are rare, and experts are rarer still.

‘European Reference Networks were set up because no single country has the expertise or resources to cover all of the known rare diseases, which number in the thousands.

‘They have played a pivotal role in harnessing the collective knowledge across the continent and in developing sustainable healthcare to treat those affected.’

Britain has been at the forefront of the creation and development of the ERNs.

As a result, the UK has reaped the benefits of ‘closer collaboration with experts and patient advocates’ across Europe.

The networks have also helped to develop guidelines, build disease registries and research teams, as well as create new education and training programmes.

Dr Tischowitz added: ‘Leaving the EU without an agreement on UK participation in the Networks means we potentially write off years of progress made by UK clinicians, researchers and patient advocates, while also reducing access to clinical trials and funding.

‘Most importantly, it will diminish our ability to provide the best care for the millions of children and adults with rare diseases and complex conditions in the future.’

Allison Watson, co-founder of Ring 20, a charity that supports people living with an ultra-rare epilepsy syndrome, highlighted the importance of having access to the ERNs.

Ms Watson, whose young adult son is also by the condition, said: ‘I have been hugely encouraged by the change that being part of an ERN can bring, for people like my son and many others living with ultra-rare diseases.

‘I believe we would not have managed this working with just UK rare disease organisations.’

She added: ‘I believe only through collaboration with our European partners and others around the world can we truly meet the needs of the affected and ultimately improve their outcomes and quality of life.’

Beverley Power, chair of congenital diaphragmatic hernia support charity CDH UK, also praised the networks for introducing ‘new and innovative ways to collaborate‘ in a bid to improve patients and families quality of life.

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