LAUSR

Background: European Reference Networks (ERNs) are virtual networks involving centres of expertise across EU Member States with the aim of tackling rare and complex diseases. The ERN ReCONNET involves currently 26 healthcare professionals (HCPs) from 8 countries and cover rare and complex connective tissue and musculoskeletal diseases (rCTDs). Patient participation and involvement, also through EURORDIS, is a key characteristic of ERNs. Objectives: To demonstrate that patients’ involvement and collaboration across disease and geographic borders via the ERN ReCONNET effectively brings better care for people living with rCTDs. Methods: The European Patient Advocacy Groups (ePAGs) provide patients’ opinion and input in all activities of the ERN. They relay the views of their wider communities, evaluate how the ERN acts on patients input, contribute to projects and research, develop and disseminate patients’ information, ensure that patient rights and choices are taken into account in decision-making and identify national groups to work with the ERN’s HCPs. To structure the patients’ involvement, a Patients’ Organizations Working Group led by a Senior and a Junior Coordinator, developed and approved its own Terms of Reference. Patients’ Representative Disease Coordinator (PDR) have been identified for most diseases. They bring patient perspective, liaise with HCPs and their wider patient community. Three ePAGs are voting members of the Steering Committee. Results: ePAGs have collaborated intensely in ERN activities, organising and participating to regular meetings, providing their input into projects. They co-designed and disseminated surveys on clinical practice guidelines and on patient education. In each disease area, they collected feedback from their community on topics such as unmet needs or therapeutic education, worked alongside HCPs on narrative reviews2, abstracts, surveys and reviews of the literature2. Lay language versions of documentation enable the wider community to understand the efforts of ERN ReCONNET, of which the ePAGs form an essential part. ePAG’s involvement in the ERN has brought perspective for the future, identifying common surveys for next year, providing input on therapeutic educational programs or preparing patient journey documentation. A project to certify websites information quality on ReCONNET diseases and disorders was approved during the last meeting. From 10 ePAGs invited at the EMA symposium on clinical trials, 2 were from ReCONNET. Conclusion: The ERN ReCONNET is a great opportunity for patients’ leadership, bridging from EULAR and its PRP program to ERN and other EU initiatives. It will make a tremendous impact on the EU diagnostic and treatment landscape bringing a better quality of life to people with rCTDs. References [1] https://ec.europa.eu/health/ern_enTi [2] https://rmdopen.bmj.com/content/4/Suppl_1 Acknowledgement: on behalf of the ERN ReCONNET European Patient Advocacy Group Disclosure of Interests: Alain Cornet Grant/research support from: No direct financial grants from Pharmaceutical companies, but some grants accrued LUPUS EUROPE does, in the form of Grants or payment for attending advisory boards or providing patient views, Speakers bureau: I have been involved in GSK panels to provide patient perspective. However, the minor service fee obtained accrued to LUPUS EUROPE ratyher than the company, Charissa Hermine Frank: None declared, Ilaria Galetti: None declared, Jörgen Grunert: None declared, vera guimaraes: None declared, lisa matthews: None declared, Sander Otter: None declared, Ana Vieira: None declared