No deal Brexit could have detrimental impact for people in UK living with a rare disease.

[2greys]

Experts have warned that a ‘no deal’ Brexit will result in the exclusion of the UK from the 24 European Reference Networks (ERNs) that were established to improve the care of patients bearing the lifelong burden of a rare disease, which require highly specialised diagnosis and treatment.

One in 17 UK citizens lives with a rare disease, which are defined as conditions that affect fewer than one in 2,000 people in the general population. A group of experts has written to The Lancet highlighting their concerns about the detrimental impact a no deal Brexit will have on these individuals.

“Rare diseases are rare, and experts are rarer still,” said Dr Marc Tischkowitz from the University of Cambridge, who helped coordinate the letter. “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’ve played a pivotal role in harnessing the collective knowledge across the continent and in developing sustainable healthcare to treat those affected.”

The UK has been at the forefront of the creation and development of these virtual networks, which involve healthcare providers across Europe. As a result, write the experts, it has been able “to reap the benefits of closer collaboration with experts and patient advocates throughout Europe”.

cam.ac.uk/research/news/no-...

[cofdrop-UK]

Thank you for your post 2g. Sad state of affairs.

Cx

[Alberta56]

Let us hope common sense prevails.

[Ian1967 in reply to Alberta56]

Unfortunately Common Sense and Boris Johnson in the same sentence is an oxymoron.

[Annie31]

Why? Collaboration wasn't an unknown entity before the EU. If the UK was at the forefront before in setting these networks up then they can do it again surely. Life doesn't begin and end with the EU or brexit, we were here before and we'll be here after. Everyone goes to great lengths to emphasize how there will be a new normal after the pandemic then maybe that's how we should deal with life after brexit and if we don't deal with something as important as climate change then none of it is going to matter either way!

[Jaybird19]

i thinkthe scientists recognising the advantage will endeavour to keep htese contacts if only unofficially

[Annie31 in reply to Jaybird19]

I think you are right! I can't see these professionals just giving up on all the work and resources amassed so far and why should they? Those scientists in the 24 countries should be more concerned with working with each worldwide from a philanthropic point of view than from a political viewpoint. Get back to what is important in life and stamp out all this negativity that prevents people going forward.