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ERN ReCONNET is the name of the European Reference Network that takes care of systemic lupus and other connective tissue diseases.
European Reference Networks were created in 2017 by the European Commission to bring together experts working on rare or complex diseases. By working across borders, at a European level, sharing expertise on rare or complex diseases, the goal is to improve early diagnosis, patient management, care delivery and offer virtual consultations of complex clinical cases requiring the expertise of the ERN.
One of the ideas is that all patients across Europe should have, through a hospital in their own country or region, access to the best care and the best European expertise, to benefit from best available treatments relating to his or her particular situation, regardless of how rare the pathology or its presentation is.
The Network improves scientific knowledge of rare connective tissue diseases. It facilitates the creation of large databases that improve learning, diagnosis, research and treatment development. ERN ReCONNET also supports educational programmes for patients, families and healthcare professionals, as well as the development of new guidelines and quality measures. Improved therapeutic protocols and greater patient involvement are also priorities.
To become members of the network, centres must demonstrate their expertise in the specific diseases for which they apply. This is defined in terms of seeing many patients (so that they build experience), having multidisciplinary teams in place, the right equipment, but also by demonstrating the depth of expertise through research and publications. Candidate centres demonstrating this high level of expertise must then be endorsed by their national authorities and be assessed by external evaluators. The full list of members of ERN ReCONNET can be found on https://reconnet.ern-net.eu/
Alongside clinicians and researchers, patient representatives called ePAGs (European Patient Advocacy Groups), play a central role in ERN ReCONNET. Their active participation ensures that work remains focused on what patients need most, and that ePAGs can bring the voices of patients in the discussions, projects and recommendations implemented by the ERN.