Events & Media

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

Good Practice: Rare eye disease ontology creation and editing

Ilaria Galetti on being an ePAG advocate

CPMS Webinar

Maria Tektonidou, Treatment of thrombotic Antiphospholipid Syndrome

Rosaria Talarico, Adherence to treatment in connective tissue diseases a multi faceted issue

Gelareh Emami - Giuseppe Turchetti, Health System Resilience in rare and complex diseases context

Vieira ◦ Bouillot ◦ Hachulla, How to explain Sjögren's syndrome to your family and friends

Zschocke - Ferraris, Molecular diagnosis of EDS: introduction and case presentations

Leema Robert - Fransiska Malfait, Cardiovascular aspects of EDS: joint ERN ReCONNET-VASCERN webinar

Fransiska Malfait & Alberto 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

Victoria Werth, Treatment of cutaneous manifestations in SLE