Title :

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.

Author(s) :

Talarico, R. [Auteur]
Aguilera, S. [Auteur]
Alexander, T. [Auteur]
Amoura, Zahir [Auteur]
CHU Pitié-Salpêtrière [AP-HP]
Andersen, J. [Auteur]
Arnaud, Laurent [Auteur]
Les Hôpitaux Universitaires de Strasbourg [HUS]
Avcin, T. [Auteur]
Marsal Barril, S. [Auteur]
Beretta, L. [Auteur]
Bombardieri, S. [Auteur]
Bortoluzzi, A. [Auteur]
Bouillot, C. [Auteur]
Bulina, I. [Auteur]
Burmester, G. R. [Auteur]
Cannizzo, S. [Auteur]
Cavagna, L. [Auteur]
Chaigne, Benjamin [Auteur]
Centre de référence des maladies auto-immunes systémiques rares d'Île-de-France / National Reference Center for Rare Systemic Autoimmune Diseases
Cornet, A. [Auteur]
Corti, P. [Auteur]
Costedoat-Chalumeau, N. [Auteur]
Dāvidsone, Z. [Auteur]
Doria, A. [Auteur]
Fenech, C. [Auteur]
Ferraris, A. [Auteur]
Fischer-Betz, R. [Auteur]
Fonseca, J. E. [Auteur]
Frank, C. [Auteur]
Gaglioti, A. [Auteur]
Galetti, I. [Auteur]
Guimarães, V. [Auteur]
Hachulla, Eric [Auteur]
Institut de Recherche Translationnelle sur l'Inflammation (INFINITE) - U1286
Centre National de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France [CeRAINO]
Holmner, M. [Auteur]
Houssiau, F. [Auteur]
Iaccarino, L. [Auteur]
Jacobsen, S. [Auteur]
Limper, M. [Auteur]
Malfait, F. [Auteur]
Mariette, Xavier [Auteur]
Center for Immunology of Viral Infections and Autoimmune Diseases, Le Kremlin Bicêtre
Marinello, D. [Auteur]
Martin, T. [Auteur]
Matthews, L. [Auteur]
Matucci-Cerinic, M. [Auteur]
Meyer, Alain [Auteur]

Milas-Ahić, J. [Auteur]
Moinzadeh, P. [Auteur]
Montecucco, C. [Auteur]
Mouthon, Luc [Auteur]
Centre de référence des maladies auto-immunes systémiques rares d'Île-de-France / National Reference Center for Rare Systemic Autoimmune Diseases
Müller-Ladner, U. [Auteur]
Nagy, G. [Auteur]
Patarata, E. [Auteur]
Pileckyte, M. [Auteur]
Pruunsild, C. [Auteur]
Rednic, S. [Auteur]
Romão, V. C. [Auteur]
Schneider, M. [Auteur]
Scirè, C. A. [Auteur]
Smith, V. [Auteur]
Sulli, A. [Auteur]
Tamirou, F. [Auteur]
Tani, C. [Auteur]
Taruscio, D. [Auteur]
Taulaigo, A. V. [Auteur]
Tincani, A. [Auteur]
Ticciati, S. [Auteur]
Turchetti, G. [Auteur]
Van Hagen, P. M. [Auteur]
Van Laar, J. M. [Auteur]
Viera, A. [Auteur]
De Vries-Bouwstra, J. K. [Auteur]
Zschocke, J. [Auteur]
Cutolo, M. [Auteur]
Mosca, M. [Auteur]

Journal title :

Clinical and experimental rheumatology

Abbreviated title :

Clin Exp Rheumatol

Volume number :

134

Pages :

3-11

Publication date :

2022-03-31

ISSN :

0392-856X

English keyword(s) :

European Reference Networks
rare and complex diseases
rheumatic and musculoskeletal diseases
connective tissue diseases
patient care
European Commission

HAL domain(s) :

Sciences du Vivant [q-bio]

English abstract : [en]

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 ...
Show more >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.Show less >

Language :

Anglais

Audience :

Internationale

Popular science :

Non

Administrative institution(s) :

Université de Lille
Inserm
CHU Lille

Collections :

• Institut de Recherche Translationnelle sur l'Inflammation (INFINITE) - U1286

Submission date :

2024-01-12T01:56:11Z
2024-03-22T08:38:05Z