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Great Britain is among the top medical experts in the field of rare diseases. The country is a very important part of the European Reference Networks (ERNs) created in 2017 by the European Commission. However, because of the Brexit, British hospitals will be excluded from these networks. More than 70 experts are raising the alert.
In an open letter published in The Lancet, Marc Tischkowitz, Beverley Power, Graham Slater and 70 additional cosignatories highlight the detrimental health implications of a “no deal” Brexit for the 1 in 17 UK citizens who are diagnosed with a rare disease. A “no deal” will result in the exclusion of the UK from the 24 ERNs that were established to improve the care of the patients bearing the lifelong burden of these conditions, which require highly specialised diagnosis and treatment.
The UK has been at the forefront of the creation and development of these networks, six of which were led from the UK. The ERNs have made it much easier to develop guidelines, create disease registries, build research collaborations, and create new education and training programmes. Above all, they have directly improved patient care by establishing a pan-European platform that brings international experts together to advise on patient-specific complex problems and therapeutic options where insufficient expertise exists in one country alone.
In the correspondence, signatories therefore want to alert that leaving the EU without an agreement on UK participation in ERNs will negate years of progress made by UK clinicians, researchers and patient advocates. It will reduce access to clinical trials and funding and diminish the ability of British healthcare professionals to provide the best care for the millions of children and adults with rare diseases and complex conditions in the future.
This correspondence 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 an ERN.