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No Deal Brexit could endanger lives of four million Brits with rare diseases – Bukipress


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A NO-DEAL Brexit would have a detrimental impact on the care received by the four million Brits who suffer from a rare disease, a group of leading clinicians have said.

The warning comes after Prime Minister Boris Johnson said on Friday it was “very, very likely” the UK would be leaving the UK without a deal in place.

Getty Images – Getty

The treatment received by four million Brits with a rare disease would suffer in the event of a no-deal Brexit, a group of clinicians have said[/caption]

PA:Press Association

Prime Minister Boris Johnson said on Friday a no-deal Brexit was ‘very, very likely’[/caption]

A no-deal exit would see the UK lose access to the 24 European Reference Networks (ERNs), a set of virtual networks that aid communication and research into rare conditions that require specialised treatment.

A total of four million people in Britain – one in 17 – suffer from a rare disease, defined as a condition that affects fewer than one in 2,000 people.

In a letter to the prestigious Lancet medical journal, 53 leading conditions and 20 patients support organisations warned that a no-deal Brexit would damage the ability of doctors in the UK to provide those patients with the “best care”.

“Rare diseases are rare, and experts are rarer still,” the letter read.

“With an estimated 6000–8000 rare diseases, ERNs were set up because no single country has the expertise or resources to cover them all.

“Thus far, ERNs have had a pivotal role in harnessing the collective knowledge across Europe and developing sustainable health care for these conditions.”

The ERNs were first established in 2017, involving more than 900 healthcare units based at over 300 hospitals in 26 EU countries.

Each of the 24 networks focuses on a particular area, such as bone disorders, childhood cancer, or immunodeficiency.

The letter said that six of the networks are currently led from the UK, and that the country is “reaping the benefits of closer collaboration with experts and patient advocates throughout Europe”. 

“The ERNs have made it much easier to develop guidelines, create disease registries, build research collaborations, and create new education and training programmes,” it said.

“Above all, they have directly improved patient care by [bringing] international experts together to advise on complex problems… where insufficient expertise exists in one country alone.”

It concluded that a no-deal Brexit would “negate years of progress made by UK clinicians, researchers, and patient advocates” while also “reducing access to clinical trials and funding”.

“Most importantly, a no-deal Brexit 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,” it said. 

Fears that no deal would be reached rose this week after talks in Brussels between Johnson and European Commission president Ursula von Der Leyen failed to overcome a number of obstacles that remain.

The key sticking points are said to include fishing quotas and whether the UK should remain bound by EU rules governing state aid.


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