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, including leading researchers from GOSH, have written to The Lancet highlighting their concerns about the detrimental impact a no deal Brexit will have on these individuals.
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.
“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 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.
Rare disease research at GOSH and the UCL Great Ormond Street Institute of Child Health (ICH) is underpinned by support from the National Institute for Health Research (NIHR) GOSH Biomedical Research Centre and GOSH Children’s Charity.