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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