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
- to increase empowerment and engagement of patients in the management of their disease;
- to improve and acquire new knowledge on these conditions;
- to develop care and quality guidelines to deliver to patients a high quality and homogeneous care;
- to identify standard, costeffective and sustainable pathways for the management of rCTDs;
- 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.