Our Network

Delivering high quality, innovative, sustainable and equitable standard of care and practice
for better access to care of European Patients with rCTDs.

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:

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.

Our Network

Rare connective tissue and musculoskeletal diseases (rCTDs) comprise a large number of diseases and syndromes including hereditary conditions (Ehlers-Danlos), rare systemic autoimmune diseases (systemic sclerosis, mixed connective tissue diseases, inflammatory idiopathic myopathies undifferentiated connective tissue diseases, anti-phospholipid syndrome) and other systemic autoimmune diseases characterized by a complex clinical picture (systemic lupus erythematosus, Sjögren syndrome).

rCTDs have a major impact on patients and society because of their burden of morbidity and mortality. Specific goals of the ReCONNET network activities are

  1. to increase empowerment and engagement of patients in the management of their disease;
  2. to improve and acquire new knowledge on these conditions;
  3. to develop care and quality guidelines to deliver to patients a high quality and homogeneous care;
  4. to identify standard, costeffective and sustainable pathways for the management of rCTDs;
  5. to facilitate data sharing and circulation of patients and health care professionals across borders.

All these activities will be facilitated by the co-design of e-toolkits and the active involvement of different professional expertise. The Network will improve care processes by increasing knowledge and communication between healthcare providers, patients and families, sharing clinical experience allowing to fill the gaps in less experienced centres, identifying common pathways for diagnosis and monitoring, defining easy access to interdisciplinary care both locally and across borders, assessing cost-effectiveness and sustainability of interventions.

The network will support the empowerment and the engagement of the patient in care pathways and will enhance their role in terms of disease awareness and co-management, ability to control the consequences of the disease and improve quality of life, clinical information collection and exchanging, interaction with HCPs.

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