Brexit could harm rare disease research and collaboration

A patient organisation has written an open letter to the UK Health Secretary Matt Hancock and Brexit Minister Michael Gove warning of the dangers of leaving the EU without guaranteed continued membership to ERNs.

European Reference Networks (ERNs), launched in March 2017, are networks that facilitate knowledge-sharing regarding complex or rare diseases. They consist of over 20,000 healthcare professionals in 26 European countries, and aim to help the 25-30 million sufferers of rare diseases in the EU.

In his open letter, John Wallace, a representative of the organisation Autoinflammatory UK, commented that:

“As the number of patients with rarer conditions in each country is low, it is only possible to recruit enough patients for clinical trials by carrying out trials across countries. A situation where UK trials are no longer able to recruit European patients would lessen the benefits for patients across the whole of Europe, as well as risk damaging UK and European science.”

The UK coordinates 6 out of 24 of the ERNs, however, it is uncertain whether they can continue to contribute after the UK leaves the EU. The open letter asks the government to ensure that ERN membership is protected in any withdrawal agreement.

The full text of the letter is available here.

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Published on 2. October 2019 in News, News EU, News UK