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The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

2022; Springer Vienna; Volume: 40; Issue: 5 Linguagem: Inglês

10.55563/clinexprheumatol/d2qz38

1593-098X

Rosaria Talarico, Silvia Aguilera, Tobias Alexander, Zahir Amoura, Jeanette Andersen, Laurent Arnaud, Tadej Avčin, Sara Marsal Barril, Lorenzo Beretta, Stefano Bombardieri, Alessandra Bortoluzzi, Coralie Bouillot, Inita Bulina, Gerd R. Burmester, Sara Cannizzo, L. Cavagna, Benjamin Chaigne, Alain Cornet, Paolo Corti, N. Costedoat‐Chalumeau, Zane Dāvidsone, Andrea Doria, Carol Fenech, Alessandro Ferraris, Rebecca Fischer‐Betz, João Eurico Fonseca, Charissa Frank, Andrea Gaglioti, Ilaria Galetti, Vera Guimarães, É. Hachulla, Monica Holmner, Frédéric Houssiau, Luca Iaccarino, Søren Jacobsen, Maarten Limper, Fransiska Malfait, Xavier Mariette, Diana Marinello, Thierry Martin, Lisa Matthews, Marco Matucci‐Cerinic, Alain Meyer, Jasminka Milas-Ahić, Pia Moinzadeh, Carlomaurizio Montecucco, Luc Mouthon, Ulf Müller-Ladner, György M. Nagy, Eunice Patarata, Margarita Pileckytė, Chris Pruunsild, Simona Rednic, Vasco C. Romão, M. Schneider, Carlo Alberto Scirè, Vanessa Smith, Alberto Sulli, Farah Tamirou, Chiara Tani, Domenica Taruscio, Anna Viola Taulaigo, Angela Tincani, Simone Ticciati, Giuseppe Turchetti, P. Martin van Hagen, Jacob M. van Laar, A J Viera, Jeska K de Vries-Bouwstra, Johannes Zschocke, Maurizio Cutolo, Marta Mosca,

Neurogenetic and Muscular Disorders Research

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe.The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources.In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients.For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.It has been five years since their kick-off launch in Vilnius in 2017.The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics.The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.