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The William Harvey Research Institute - Barts and The London

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

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.

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EU and GB flag against the backdrop of the Houses of Parliament.

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 can only be studied in collaboration,” said Professor Márta Korbonits from the William Harvey Research Institute at Queen Mary University, who helped coordinate the letter. “The UK is one of the leading scientific countries in rare disease research and a key member of many, if not all, the ERN networks.”

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”.

The ERNs have made it much easier to develop guidelines, create disease registries, build research collaborations, and create new education and training programmes. Crucially, they have directly improved patient care by establishing a pan-European platform that brings international experts together to advise on patient-specific complex problem and therapeutic options where insufficient expertise exists in one country alone.

Professor Korbonits added: “The loss will be severely felt on both side, EU countries will miss the high quality clinical and scientific input from UK colleagues as well as many well-organised and active UK patient groups. UK doctors, scientist and patients will greatly miss out on the loss of collaboration with EU countries.”

The letter has a total of 73 signatories, including 20 signatories each representing a patient support group and 53 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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