Brexit can’t endanger the lives of 4 million people with rare diseases

Experts warn that Brexit could endanger the lives of 4 million people with rare diseases in the UK

• Experts and patient advocacy groups signed a letter in the prestigious journal The Lancet
• Claims dropped out of Europe without a deal on January 1st will endanger life
• Brian may lose access to established networks to study rare diseases
• These so-called ERNs allow important research to be conducted internationally, and Brexit puts rare diseases at a disadvantage to 4 million British people.

Along Mailonline Joe Pinkstone

Release: December 11, 2020 6:30 pm EST | Has been updated: December 11, 2020 6:30 pm EST

Experts warn that if Britain runs out of Europe without an arrangement, four million British people will have a rare disease and treatment could be inadequate.

A total of 53 major clinicians and 20 patient advocacy groups have signed letters warning about the impact of No Deal.

They say that without a deal, the UK would not have access to the 24 European Reference Networks (ERNs) built to inform and support the study of rare diseases.

The rare diseases covered by these networks affect less than 1 in 2,000 people.

Prime Minister Boris Johnson today warned that the split of the agreement is now “very likely.”

The dinner between Mr Johnson and EU chief Ursula von der Reyen in Brussels on Wednesday night failed to provide a breakthrough in trade negotiations.Doctors warn that Brexit will be disastrous for British people with rare diseases

The collapse of talks in Brussels is endangering their lives, warning doctors in a letter to a prestigious British medical journal Lancet..

No transactions are excluded from the 24 European Reference Network (ERN) established to improve care. Disorders require highly specialized diagnosis and treatment.

Dr Marc Tischowitz, co-author of the University of Cambridge, said: ‘Rare illnesses are rare, and specialists are even rarer.

‘Europe’s reference network was established because no country has the expertise and resources to cover all the thousands of known rare diseases.

“They have played a vital role in harnessing collective knowledge across the continent and developing sustainable medicine to treat affected people.”

The UK has been at the forefront of creating and developing virtual networks involving healthcare providers across Europe.

As a result, “we were able to benefit from close collaboration with experts and patient advocates across Europe,” the team says.

ERN makes it much easier to create guidelines, disease registries, research collaborations, and new education and training programs.

Ursula von der Leyen, drawn with Angela Merkel and Charles Michel, told European leaders at a meeting of the European Council that “it is more likely that there is no deal than a deal.” ..

Dr. Tischowitz added:

“Most importantly, the ability to provide the best care to millions of children and adults with rare diseases and complex conditions in the future is diminished.”

Allison Watson co-founded Ring20, a charity that helps people with ultra-rare syndromes affecting young adult sons. She is also the co-leader of EpiCAREERN for rare and complex epilepsy.

Ms. Watson said: “For my son and many other people with ultra-rare diseases, I was greatly encouraged by the changes that being part of the ERN could bring.

“I think we couldn’t control this on the UK’s rare disease organization alone.”

“I believe that only through collaboration with European partners and other partners around the world can we truly meet the needs of affected people and ultimately improve their outcomes and quality of life. “

One of the main barriers to research in the field of rare diseases is access to patients and patient data.

ERN covers a huge population, giving you access to more patient data. This is a valuable resource in the fight against rare diseases.

What do the major players say about the status of Brexit trade negotiations?

Boris Johnson: “From where I stand now, I have to say that here in Blythe it is very likely that we will have to find a solution that we think is great for the UK. From January 1st we hope You can do exactly what you are doing, which is clearly different from what we are trying to achieve, but that this country is ready and, as I say, comes out in terms of world trade. There is no doubt.

Ursula von der Leyen: “On the basic issues, we are divided. In an equal competition, we have repeatedly revealed to our UK partners that the principle of fair competition is a prerequisite for privileged access to the EU market. It was.

Emmanuel Macron: “I don’t want to have a cake and eat it [on fishing], Number. All I want is a cake that is worth its weight. Because I don’t give up my share of it either. “

Simon Coveney: “Let the UK become a partner in the EU and work with us, as opposed to friends moving in the other direction against the backdrop of failed negotiations and the ensuing game of blame and pain.”

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