Press release

UK healthcare professionals warn on detrimental effect of Brexit on people with rare diseases

14 December 2020
UK experts and hospitals have been part of European Reference Networks (ERNs) since they were first launched by the European Commission in 2017 including 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. A no-deal Brexit resulting in the exclusion of UK hospitals from ERNs will have devastating consequences on people affected by rare diseases in the UK. Healthcare professionals based in the UK and part of ERNs share their concerns and raise the alarm.
A letter by ERN GENTURIS member Dr Marc Tischkowitz from the University of Cambridge, on the detrimental effects of a no-deal Brexit for the one in 17 UK citizens who are diagnosed with a rare disease, was published in the Lancet.

There are an estimated 6000-8000 rare diseases for which no country alone can have specific knowledge as it is indeed rare and scattered across Europe and beyond. This is why ERNs were set up to facilitate the exchange of knowledge and expertise across borders which ultimately benefits patients providing them with a timely and appropriate diagnosis as well as specialized treatment and care.

Dr Tischowitz says: “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.”

The letter has a total of 73 signatories, including 19 signatories each representing a patient support group and 54 signatories from senior clinicians and researchers who are currently members of a European Reference Network and who will be removed from the networks as of 1 January if no agreement is reached.
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