OIFE is supporting the Genetic Alliance UK’s ProtectERNs campaign that calls on the UK government and the EU to secure the sustained involvement of the UK in European Reference Networks (ERNs) post Brexit. This is especially important for the network for rare bone disorders (ERN BOND), because they have a substantial number of UK healthcare providers actively involved in the network.

ERNs connect patients, clinicians and researchers, allowing knowledge and expertise on rare diseases to be shared across Europe and in turn provide patients with access to diagnosis and transformative care without the burden of long-distance travel.

Support the campaign by signing up here: https://protect-erns.eu/showyoursupport/

In the photo you can see two of the patient representatives in ERN BOND – Rebecca from Norway and Inês from Portugal.