As Coordinators of the 24 European Reference Networks (ERNs), we stand together and united with our 900 strong members (healthcare providers) and the patient community, in the fight against rare diseases. Rare diseases are indiscriminate in nature and do not recognise borders. Individually no one country can successfully address the specific challenges rare diseases presents. Rare diseases clearly evidence the need for continued and enhanced EU-wide collaboration. ERNs bring together the collective knowledge and expertise of clinicians and researchers from across Europe, to take meaningful steps in tackling the impact of these rare diseases, demonstrating EU-added value.
We believe that European Union and its members should remain steadfast in their resolve to tackle rare diseases and complex conditions requiring highly specialised healthcare together, taking steps to safeguard our activity to help the complex needs of this vulnerable patient population. We want to highlight in the strongest possible terms the importance of maintaining our current membership of the ERNs. We call upon the European Commission and the UK government to ensure that a solution is found so that the UK healthcare providers can continue to participate in the ERNs and all our patients can benefit from our collaboration.
For more information please see this document.
