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.

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

Bortoluzzi, Alessandra
Methodology
;
2022

Abstract

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.
2022
Talarico, Rosaria; Aguilera, Silvia; Alexander, Tobias; Amoura, Zahir; Andersen, Janette; Arnaud, Laurent; Avcin, Tadej; Marsal Barril, Sara; Beretta, Lorenzo; Bombardieri, Stefano; Bortoluzzi, Alessandra; Bouillot, Coralie; Bulina, Inita; Burmester, Gerd R; Cannizzo, Sara; Cavagna, Lorenzo; Chaigne, Benjamin; Cornet, Alain; Corti, Paolo; Costedoat-Chalumeau, Nathalie; Dāvidsone, Zane; Doria, Andrea; Fenech, Carol; Ferraris, Alessandro; Fischer-Betz, Rebecca; Fonseca, João Eurico; Frank, Charissa; Gaglioti, Andrea; Galetti, Ilaria; Guimarães, Vera; Hachulla, Eric; Holmner, Monica; Houssiau, Frederic; Iaccarino, Luca; Jacobsen, Søren; Limper, Maarten; Malfait, Fransiska; Mariette, Xavier; Marinello, Diana; Martin, Thierry; Matthews, Lisa; Matucci-Cerinic, Marco; Meyer, Alain; Milas-Ahić, Jasminka; Moinzadeh, Pia; Montecucco, Carlomaurizio; Mouthon, Luc; Müller-Ladner, Ulf; Nagy, György; Patarata, Eunice; Pileckyte, Margarita; Pruunsild, Chris; Rednic, Simona; Romão, Vasco C; Schneider, Matthias; Scirè, Carlo Alberto; Smith, Vanessa; Sulli, Alberto; Tamirou, Farah; Tani, Chiara; Taruscio, Domenica; Taulaigo, Anna V; Tincani, Angela; Ticciati, Simone; Turchetti, Giuseppe; van Hagen, P Martin; van Laar, Jacob M; Viera, Ana; de Vries-Bouwstra, Jeska K; Zschocke, Johannes; Cutolo, Maurizio; Mosca, Marta
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