ERNs and Brexit

The Brexit transition period for the United Kingdom, which expired on 31 December 2020, marked the end of UK centre participation in European Reference Networks. However, patient representatives representing UK patient organisations can still participate in ERNs as the ERN status of UK-based patient organisations differs from that of UK healthcare providers.

In this context, a letter was published in the Lancet on the detrimental effects of a no-deal Brexit to rare disease patients in the UK. Written by an ERN GENTURIS member from Cambridge UK, the letter had a total of 73 signatories, from UK senior clinicians and researchers who are currently members of an ERN, and patient support group representatives.