European Reference Networks (ERNs) were created under the 2011 Directive on Patient Rights’ in Cross-Border Healthcare. They are based on the voluntary cooperation of Member States that contribute to the ERNs’ activities in accordance with their national legislation. ERNs are operational since March 2017. To ensure a proper and sustainable functioning of the ERNs and to reap all benefits for patients suffering from rare and low prevalence complex diseases across the EU, the ERNs need to be linked in a clear and stable way to the healthcare systems of the Member States. These are issues of key importance and demand tangible actions. This Statement aims to give incentives to Member States to further enhance the integration process based on the input provided by the Working Group on Integration. Member States are encouraged to facilitate the integration of ERNs to their healthcare systems by: assessing and if needed adapting or updating the national policy and/or legal framework; creating appropriate (clear and well-defined) patients’ pathways in order to improve the care and management of patients with complex or rare diseases; developing clear systems for referral to ERNs; developing a clear strategy for communicating and disseminating information about ERNs; reflecting on the means to best support. For more information click here.
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