I warmly welcome the news that we are rejoining the EU Horizon scheme (Letters, 12 September), but we need to remember that this agreement does not include the 24 European Reference Networks (ERNs) that were established to improve the care of the patients bearing the lifelong burden of rare diseases that require highly specialised diagnosis and treatment.
There are an estimated 6,000–8,000 rare diseases, which together affect 1 in 17 of the population, but no single country has the expertise or resources to cover them all. From their inception in 2017, ERNs have played a pivotal role in harnessing the collective knowledge across Europe making it 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.
We had been at the forefront of the creation and development of these networks, six of which were led from the UK, and we were just beginning to realise the benefits of closer collaboration with experts and patient advocates throughout Europe when we had to withdraw in 2020 as a result of Brexit.
The absence of an agreement on UK participation in ERNs has negated years of progress made by UK clinicians, researchers and patient advocates, and it has diminished our ability to provide the best care for the millions of children and adults with rare diseases and complex conditions. We now urgently need to make up for the time we have lost.
Prof Marc Tischkowitz
University of Cambridge
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