The aim of the ERN-RECONNET’s annual work plan for 2017 is to establish a community to enhance transnational cooperation between different groups (healthcare providers, patients, caregivers and families, stakeholders, etc.) to develop a comprehensive and harmonized approach to rare and complex autoimmune and hereditary connective and musculoskeletal diseases (rCTDs). For this purpose, activities planned for year 1 are focused on the establishment of a solid, transparent and multi-disciplinary network (also resting on existing international clinical networks, scientific societies and/or international projects), and on the development of proper networking activities as well as of a plan to ensure the integration of the ERN in the overall environment of actors involved in the management of rCTDs (from clinicians to healthcare systems, authorities, industries, insurers, researchers, etc). The main target groups of the ERN are patients, their families and caregivers. They will be actively involved participating to the meetings for the identification of unmet needs related to care and education and in the co-design activity for implementing and customising the contents of the central ERN IT platform with the specific needs of the ERN-RECONNET, that will improve their proactive participation to the management of the disease.Member HCPs are also a major target group. HCPs will work together and join their expertise in the ERN-RECONNET. They will revise current pathways recognising what matters in care and the relevance of patients reported outcomes in the disease management. Members and non-members health professionals, stakeholders as healthcare providers, healthcare systems, HTA bodies and reimbursement authorities, health insurers, industry and scientific Community, will be the target of dissemination activities in order to set the basis for a collaborative framework for action in the field of rCTDs.
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The objective of the ERN ReCONNET’s annual work plan for 2018 is to go on in the work already started during the first year, aimed at improving a community to enhance transnational cooperation between different groups to develop a comprehensive and harmonized approach to rare and complex autoimmune and hereditary connective and musculoskeletal diseases (rCTDs). According to the general principles of the ERNs of establishing, coordinating and managing the patients and HCP communities and pooling knowledge and expertise across the EU, all the target groups of the ERN ReCONNET will participate in the activities of the second year.
The main target groups of the ERN are patients, their families and caregivers. They will be actively involved in: i) decision making process as active members of ERN bodies; ii) participating to the activities for the identification of unmet needs related to care and education; iii) participating to the co-design activity for implementing and customising the contents of website with the specific needs of the ERN ReCONNET that will improve their proactive participation to the management of the disease.
Member HCPs are also a major target group. HCPs will work together and join their expertise in the ERN ReCONNET (through periodic meetings and through the IT platform). They will revise current pathways recognizing what matters in care and the relevance of patients reported outcomes in the disease management. Member health professionals, stakeholders as healthcare providers, healthcare systems, HTA bodies and reimbursement authorities, health insurers, industry will be involved in the co-design and planning of training activities about health economic issues and HTA.
All groups will be the target audience of dissemination activities in order to set the basis for a collaborative framework for action in the field of rCTDs.
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The ERN ReCONNET 3-year Work Plan will set the stage for crucial achievements in the field of rare ad complex connective tissue diseases (rCTDs), allowing the Network to address its main commitment: the benefit of patients affected by rCTDs.
As the aim of the 3-year program is to establish, coordinate and manage patients and HCPs communities and to pool knowledge and expertise across the EU, all the target groups will participate in all the activities planned. Specifically, the main target groups are represented by: patients, caregivers and families, HCP members, healthcare professionals, scientific societies.
The main activities that will be carried out are related to the coordination and management, empowerment and engagement of patients, families and caregivers, sharing of best practice, training and e-learning, research and innovation knowledge, dissemination and networking and sustainability.
The expected results of the activities of the next three years will be represented by the availability of specific tools aimed at harmonizing the clinical and economical approach to rCTDs and at creating minimum standards of healthcare services essential for the management of rCTDs across Europe and providing a crucial impact on the lives of more than 500.000 people affected by rCTDs.

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Rare connective tissue and musculoskeletal diseases (rCTDs) comprise a large number of diseases and syndromes including hereditary conditions (Ehlers Danlos, Marfan), 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, Sj�gren 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 (i) to increase empowerment and engagement of patients in the management of their disease; (ii) to improve and acquire new knowledge on these conditions; (iii) to develop care and quality guidelines to deliver to patients a high quality and homogeneous care; (iv) to identify standard, cost-effective and sustainable pathways for the management of rCTDs; (v) 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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