The European Reference Networks (ERNs) were launched by the European Commission in 2017 with the mission to improve quality, safety and access to highly specialised and sustainable healthcare to European patients with rare, low-prevalence and complex diseases.¹

ERN ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases and covers 10 musculoskeletal and connective tissue diseases (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), and undifferentiated connective tissue diseases (UCTD). ERN ReCONNET currently has 55 Full Members and 9 Affiliated Partners (APs) from over 23 European countries.

ERN ReCONNET can be viewed as an infrastructure where all the stakeholders (health care professionals, patients, families, health care systems, hospital managers, private sectors, etc.) meet and work together to achieve common goals.

One major objective of ReCONNET is to promote a partnership with patients (patients’ advocates – ePAGs). Since 2017 this objective has been pursued by starting to ensure and promote patients’ representation and their active involvement in all the ERN activities. In fact, the ePAG advocates have been involved in different levels of the network’s governance: the Steering Committee, the respective Disease Groups where they collaborate to plan and implement activities, and more recently in the Working Groups (WG) where they act as co-chairs in three WGs. ePAG representatives provide patients’ opinions and input in the different ERN activities, collaborate in the evaluation of the ERN actions, contribute to research, participate to dissemination activities, and ensure that patient’s rights and choices are considered in decision-making.

Thanks to this collaboration, the opinions, needs and priorities of the ePAG advocates and of their communities have been integrated into the activities of ERN ReCONNET. ePAG advocates and patients’ representatives have participated to research activities, co-authored many ReCONNET publications, participated actively as speakers to ERN meetings and in the first ERN ReCONNET congress held in Brussels in 2023, and have disseminated ERN ReCONNET activities at international meetings including EULAR.

All these activities are promoting the culture of an effective and solid patient-clinician partnership and are triggering a cultural change in the healthcare ecosystem at international level.

Reference

1. European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. https://reconnet.ern-net.eu . Accessed July 2023.

Learning Objectives

• Explain the value of ERN ReCONNET’s infrastructure in supporting patients, their families and healthcare professionals in working together to achieve common goals

• Discuss the value of patient representation and their active involvement in all the ERN activities to ensure patients’ rights and choices are considered in clinical decision making.