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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