European Reference Networks (ERNs) are virtual networks of specialist hospitals across Europe that address rare and complex conditions (such as OA/TOF). 

TOFS Trustee, Graham Slater, who is also the Chair of EAT, is the co-author of a letter published last Saturday by The Lancet, the UK’s leading medical journal, which draws attention to these unfortunate consequences of Brexit which will affect UK rare disease patients. You can read the letter here.

The ERNs were established in 2017 by the EU, and aim to facilitate discussion, and exchange life-saving knowledge, about rare diseases and conditions that require highly specialised treatment and which benefit from concentrated knowledge and resources.

One of the ERNs ( ERNICA - ERN on Inherited and Congenital Anomalies) deals with OA/TOF, and - through EAT (the international federation of OA support groups, of which TOFS is a founder member) - TOFS is actively involved in collaborative projects with clinicians from the expert centres in this network.

Regrettably, a by-product of Brexit is that from January 1st, 2021 those UK hospitals which currently are members of the ERNs will no longer be able to participate.

TOFS will of course support initiatives which seek to restore UK hospitals to these networks, and we will report further should there be developments in this matter.