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

R. Talarico, S. Aguilera, T. Alexander, Z. Amoura, J. Andersen, L. Arnaud, T. Avcin, S. Marsal Barril, L. Beretta, S. Bombardieri, A. Bortoluzzi, C. Bouillot, I. Bulina, G.R. Burmester, S. Cannizzo, L. Cavagna, B. Chaigne, A. Cornet, P. Corti, N. Costedoat-ChalumeauZ. Dāvidsone, A. Doria, C. Fenech, A. Ferraris, R. Fischer-Betz, J.E. Fonseca, C. Frank, A. Gaglioti, I. Galetti, V. Guimarães, E. Hachulla, M. Holmner, F. Houssiau, L. Iaccarino, S. Jacobsen, M. Limper, F. Malfait, X. Mariette, D. Marinello, T. Martin, L. Matthews, M. Matucci-Cerinic, A. Meyer, J. Milas-Ahić, P. Moinzadeh, C. Montecucco, L. Mouthon, U. Müller-Ladner, G. Nagy, E. Patarata, M. Pileckyte, C. Pruunsild, S. Rednic, V.C. Romão, M. Schneider, C.A. Scirè, V. Smith, A. Sulli, F. Tamirou, C. Tani, D. Taruscio, A.V. Taulaigo, A. Tincani, S. Ticciati, G. Turchetti, P.M. van Hagen, J.M. van Laar, A. Vieira, J.K. de Vries-Bouwstra, J. Zschocke, M. Cutolo, M. Mosca

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)S3-S11
JournalClinical and Experimental Rheumatology
Volume40
Issue number5
DOIs
Publication statusPublished - 2022

Keywords

  • Connective Tissue
  • Europe
  • Health Personnel
  • Humans
  • Musculoskeletal Diseases
  • Rare Diseases
  • SARS-CoV-2 vaccine
  • antiphospholipid syndrome
  • awareness
  • clinical practice
  • coronavirus disease 2019
  • drug efficacy
  • drug safety
  • Ehlers Danlos syndrome
  • empowerment
  • European Reference Network
  • family decision making
  • health care access
  • health care availability
  • health care cost
  • health care disparity
  • health care organization
  • health care planning
  • health care quality
  • health promotion
  • human
  • immunoglobulin G4 related disease
  • infection risk
  • life expectancy
  • medical education
  • mixed connective tissue disease
  • musculoskeletal disease
  • myositis
  • pandemic
  • patient care
  • patient education
  • patient right
  • practice guideline
  • prevalence
  • professional knowledge
  • quality of life
  • rare disease
  • relapsing polychondritis
  • Review
  • Sjoegren syndrome
  • systemic lupus erythematosus
  • systemic sclerosis
  • undifferentiated connective tissue disease
  • unmet medical need
  • vaccination
  • connective tissue
  • health care personnel
  • connective tissue diseases
  • European Commission
  • European Reference Networks
  • rare and complex diseases
  • rheumatic and musculoskeletal diseases

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