ERN ReCONNET
Events & Media
Event & Media
European Commission Videos
ERN Clinical Patient Management System Overview
ERNs presentation
ERNs presentation (subtitled)
Clinical Patient Management System: Getting Started
ERNs presentation (2018)
How the EU connected experts to treat rare diseases
ERN Animation clip for patients and health professionals (english subtitles)
CPMS: Getting Set-Up and Logged In to CPMS
Rare diseases: how the European Reference Networks support patients
Rare diseases: how the European Reference Networks support health professionals
Webinar on COVID-19 and Rare Connective Tissue and Musculoskeletal diseases and conditions
EURORDIS Videos
Good Practice: Rare eye disease ontology creation and editing
Ilaria Galetti on being an ePAG advocate
CPMS Webinar
FAI²R Videos
Other organisations Videos
Patient Therapeutic Education Program (french with english subtitles)
Webinars
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Emanuel Della Torre and Tobias Alexander: "IgG4 related disease a challenge in the diagnosis"
L.Kawka and L.Arnaud:"What do we know about Fatigue in systemic lupus, a LEAF evidence-based update"
Maria Tektonidou: "Treatment of thrombotic Antiphospholipid Syndrome"
Rosaria Talarico: "Adherence to treatment in connective tissue diseases: A multi-faceted issue"
Gelareh Emami and Giuseppe Turchetti: "Health System Resilience in rare & complex diseases context"
A. Vieira, C. Bouillot, E. Hachulla: "How to explain Sjögren's syndrome to your family and friends"
A. Ferraris and J. Zschocke: "Molecular diagnosis of EDS: Introduction and case presentations"
F. Malfait: and L. Robert: "Cardiovascular aspects of EDS: joint ERN ReCONNET-VASCERN webinar"
F. Malfait and A. Sulli: "Skin manifestations in EDS: What are they and how to manage them"
Castori, Hypermobile EDS and Hypermobility Spectrum Disorders what is the difference
Maurizio Cutolo, The Rheumatological point of view of EDS Syndromes: Articular manifestations
Laurent Arnaud, Drug-induced lupus. From historical case reports to big data
Ilaria Galetti and Rosaria Talarico, Clinical practice guidelines: what do you need to know
Giuseppe Turchetti, Economic evaluation techniques in healthcare: a practical toolkit
Silvia Aguilera and Marta Mosca, Pregnancy in rCTDs
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