Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.

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Title: Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.
Authors: Andersen J; Lupus Europe, Brussels, Belgium., Talarico R; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy. Electronic address: rosaria.talarico@ao-pisa.toscana.it., Marinello D; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Aguilera S; Spanish Association for Antiphospholipid Syndrome, Elche, Spain., Galetti I; Federation of European Scleroderma Associations, Milan, Italy., Bandeira M; Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon; Academic Medical Centre and Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Portugal., Ballarin Castan J; Asociación Española de pacientes con Enfermedad Asociada a IgG4, Madrid, Spain., Blagojevic J; Department of Experimental and Clinical Medicine, University of Florence, and Division of Rheumatology Azienda Ospedaliero Universitaria Careggi, Florence., Bouillot C; Sjögren Europe, Gland, Switzerland., Bucsa C; Association of Romanian Relapsing Polychondritis Patients, Cluj-Napoca, Romania; Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania., Cannizzo S; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Cavagna L; Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy., Ciupera M; Let's stick together Association (3majmy się Razem Association), Warszawa, Poland., Collado E; Asociación Nacional del Síndrome de Ehlers-Danlos e Hiperlaxitud, Murcia, Spain., Cornet A; Lupus Europe, Brussels, Belgium., Damian L; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine Iuliu Hatieganu, ClujNapoca, Romania., Diederichsen L; Center for Rheumatology and Spine Diseases, COPEACT, Copenhagen University Hospital, Rigs hospitalet, Copenhagen, Denmark., Drapalova O; Czech Myositis Working Group, Czech League against Rheumatism, Prague, Czech Republic., Elefante E; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Farrington S; FESCA-Federation of European Scleroderma Associations, Saint Maur, Belgium., Frank C; bindweefsel.be (Flemish Association for Hereditary Connective Tissue Disorders), Koersel, Belgium., Gaglioti A; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Guiducci S; Department of Experimental and Clinical Medicine, University of Florence, and Division of Rheumatology Azienda Ospedaliero Universitaria Careggi, Florence., Guimaraes V; Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal., Luciu R; ART Cluj-Association of Patients with Inflammatory Rheumatic Diseases in Transylvania, Cluj-Napoca, Romania., Matthews L; Relapsing Polychondritis Awareness and Support, Worcester, UK., Moroncini G; Department of Clinical and Molecular Sciences, Marche Polytechnic University and Clinica Medica, Department of Internal Medicine, Marche University Hospital, Ancona, Italy., Olesińska M; Department of Connective Tissue Diseases, National Institute of Geriatrics, Rheumatology and Rehabilitation, Warsaw, Poland., Patsalias A; European IgG4-RD Patient Federation, Brussels, Belgium., Peene I; Ghent University Hospital and Gent University, Ghent, Belgium., Piantoni S; Rheumatology and Clinical Immunology Unit, Azienda Socio Sanitaria Territoriale, Spedali Civili, Department of Clinical and Experimental Sciences, ASST Spedali Civili, Brescia, Italy; University of Brescia, Brescia, Italy., Pizzorni C; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy., Paolino S; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy., Pha M; Groupement hospitalier Pitié-Salpêtrière, AP-HP, centre de référence des maladies auto-immunes et auto-inflammatoires systémiques rares de l'adulte d'Ile-de-France, Centre et Martinique, service de médecine interne 2, Institut E3M, Paris, France., Pamfil C; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine Iuliu Hatieganu, ClujNapoca, Romania., Scheerhoorn-Pullen J; Dutch Association for Patients with Rare Connective Tissue Diseases, Utrecht, Netherlands., Schlüter S; Myositis-Gruppe, Deutsche Gesellschaft für Muskelkranke, Freiburg, Germany., Scrivo R; Rheumatology Unit, Department of Clinical Internal, Anaesthesiologic and Cardiovascular Sciences, Sapienza University, Rome, Italy., Sciascia S; University Center of Excellence on Nephrologic, Rheumatologic and Rare Diseases, Department of Clinical and Biological Sciences, and SCDU Nephrology and Dialysis, S. Giovanni Bosco Hospital, Turin, Italy, ASL Città di Torino, Turin, Italy; University of Turin, Turin, Italy., Testoni M; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Vieira A; Liga Portuguesa Contra as Doenças Reumáticas, Lisbon, Portugal., Cutolo M; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Italy., Burmester G; Department of Rheumatology and Clinical Immunology, Freie Universität Berlin and Humboldt-Universität zu Berlin, Charité Universitätsmedizin Berlin, Berlin, Germany., Mosca M; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.
Source: The Lancet. Rheumatology [Lancet Rheumatol] 2026 Apr; Vol. 8 (4), pp. e311-e319. Date of Electronic Publication: 2026 Jan 21.
Publication Type: Journal Article; Review
Journal Info: Publisher: Elsevier Ltd Country of Publication: England NLM ID: 101765308 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2665-9913 (Electronic) Linking ISSN: 26659913 NLM ISO Abbreviation: Lancet Rheumatol Subsets: MEDLINE
Database: MEDLINE Ultimate
Description
ISSN:2665-9913
DOI:10.1016/S2665-9913(25)00284-X