Our Network

ERN ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases.

The main aim of ERN ReCONNET is to improve the management of rare connective tissue and musculo-skeletal diseases (rCTDs) across the EU. The main objectives of ERN ReCONNET are:

• Realisation of the potential of European cooperation among rCTDs stakeholders, by providing a stable and fully functioning European infrastructure on rCTDs
• Provision of highly-specialised care for rCTDs patients and promotion of improvements in the cost-effective delivery of diagnosis, management and monitoring of rCTDs patients
• Pooling, advancing and exchanging of knowledge and information on rCTDs by providing training and education for rCTDs stakeholders and by facilitating the mobility of expertise
• Stimulating and encouraging collaborative patient-centered research in rCTDs
• Promoting the empowerment and the involvement of rCTDs patients in the rCTDs community

ERN ReCONNET currently covers the following rCTDs:

• Antiphospholipid Syndrome (APS)
• Ehlers-Danlos Syndromes (EDS)
• Idiopathic Inflammatory Myopathies (IIM)
• IgG4-Related Diseases (IgG4-RD)
• Mixed Connective Tissue Diseases (MCTD)
• Relapsing Polychondritis (RP)
• Sjögren’s Syndrome (SS)
• Systemic Lupus Erythematosus (SLE)
• Systemic Sclerosis (SSc)
• Undifferentiated Connective Tissue Diseases (UCTD)

The ERN ReCONNET is conceived as a multi-stakeholder infrastructure going beyond geographical boundaries which purpose is to serve as a meeting point of needs, feedbacks and expertise for HCPs, patients, families and for other stakeholders involved in rCTDs (other networks, authorities, health systems, private sectors, etc.).

Currently, ERN ReCONNET involves 63 Healthcare Providers: 54 Full Members and 9 Affiliated Partners (APs) over 23 European countries: Austria, Belgium, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Slovenia, Spain, Sweden, and The Netherlands.

In addition, ERN ReCONNET has established a formal partnership with patients’ representatives (ePAG Advocates) that are actively integrated in the Network.

The current Grant of ERN ReCONNET involves seven beneficiaries belonging to the Network as Full Members:

• Azienda Ospedaliero Universitaria Pisana – Pisa (Italy) (ERN ReCONNET Coordinating Healthcare Provider)
• IRCCS AOU San Martino – Genova (Italy)
• AOU Meyer di Firenze (Italy)
• Ghent University Hospital – Ghent (Belgium)
• CHRU de Lille – Lille (France)
• Unidade Local de Saúde de Santa Maria (previously Centro Hospitalar Universitário de Lisboa Norte, EPE) – Lisbon (Portugal)
• University Medical Centre Ljubljana – Ljubljana (Slovenia)

The workplan of the current Grant includes the following work packages:

• WP1 – Coordination
• WP2 – Dissemination
• WP3 – Evaluation
• WP4 – Healthcare and CPMS
• WP5 – Registries, data management and analysis
• WP6 – Training and Education
• WP7 – Clinical Practice Guidelines and Clinical Decision Support Tools
• WP8 – Capacity building and best practice for Ukrainian competent authorities and healthcare units
• WP9 – Sustainability and Networking