Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website.
An information hub with a patient-centered approach
Welcome to ERN ReCONNET
European Reference Networks
Over 30 million people in Europe are affected by more than 6.000 rare diseases (RD).
Unfortunately, many of them still have limited access to timely diagnosis and high-quality treatment. Moreover, the scientific evidence in RD may be scarce because of low numbers of patients and improving the evidence by pooling data in small populations can often be a challenge. In order to address these challenges, the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across the European Union (EU).
The mission of the ERNs is to tackle low prevalence and rare diseases 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 low prevalence diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.
Since 2017, 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.
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),
- 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.).
ERN ReCONNET currently involves 64 Healthcare Providers: 55 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 ERN ReCONNET.