No deal Brexit means that the UK will be excluded from the 24 ERNs (European Reference Networks). Without the sharing of information, data, and research across countries, rare disease research could be severely impacted.
Researchers, patients, and caregivers alike have recognized the severity of the potential exclusion and have written a letter expressing all of their concerns. This letter has 73 different signatories. 20 of these are from patients support groups, and 53 are from researchers who are members of the ERN.
If no agreement is reached by January 1, 2021, UK members will be removed.
While rare diseases are rare, experts in rare disease are even more rare. For this reason it’s very important for experts to collaborate with one another. This is why the ERN was first created. No country has enough resources or knowledgeable clinicians/researchers to treat every unique rare disease. Although these conditions affect few people each, there are thousands of different types that necessitate their own study.
Collaboration means more sustainable healthcare.
The UK was one of the forefront collaborators in the initial development of the network. Together, the countries have worked to establish research guidelines, data registries, and research projects. They have also formed education programs and ultimately, have made significant improvements in patient care.
Eliminating the UK from this network could diminish years of progress and impede their ability to move forward in rare disease research effectively. This could lead to reduced quality of life for patients, who ultimately should not be bearing the brunt for politics.
You can read more about this issue and how it may impact the rare disease community here.