Explaining Systemic Sclerosis (SSc) to family and friends

Short description
This webinar brings together 2 European patient representatives and 2 European experts familiar with systemic sclerosis (SSc). It will be an interactive presentation. The ePAGs will start by presenting their disease in laymans version for patients, family and friends and for caregivers who want to learn about systemic sclerosis and how to explain their disease and the SSc experts will add on with their longstanding experiences as caregivers on the topics mentioned by the ePAGs.
Speakers
ERN ReCONNET ePAG Sue Farrington is currently president of the Federation of European Scleroderma Associations (FESCA) and Chief Executive of Scleroderma & Raynaud’s UK (SRUK). Both organisations work with the community to advocate for improvements in the healthcare system and to accelerate the benefits of research. Sue Farrington is Chair of the Rare Auto-Immune Rheumatic Disease Alliance (RAIRDA), a partnership established in 2016 to improve the quality of life of people living with rare autoimmune rheumatic diseases. Sue Farrington is a member of the UCL Partners Academic Health Science Centre Infection, Immunity and Inflammation Patient and Public Advisory Group.
ERN ReCONNET ePAG Ilaria Galetti is active member of Italian Group Against Scleroderma (GILS), Federation of European Scleroderma Associations (FESCA) and EURORDIS-Rare Diseases Europe. She attended both EURORDIS Summer and Winter Schools on research and clinical trials as such as the Italian Superior Society (ISS) School on Registries for Rare Diseases.
Prof. Marco Matucci Cerinic is Professor of Rheumatology at the Vita Salute University San Raffaele, Milano Italy, and Chairman of the World Scleroderma Foundation (WSF). Prof. Matucci Cerinic's clinical and scientific activity is focused on the pathogenesis, diagnosis and treatment of patients with autoimmune rheumatic diseases, with a particular interest in rare immune-mediated diseases like systemic sclerosis, myositis, Sjögren's syndrome. His professional interest is also focused on osteoarthritis, arthritis and spondyloarthritis. He is the author of more than 1320 original scientific articles published in international journals. His H-index is 96 (scopus).
Prof. Vanessa Smith is head of clinics at the Ghent University hospital. She is health care provider representative, Chair of the Flemish network on Rare Connective tissue diseases and Belgian national expert contact point for Health Authorities. She is disease coordinator of systemic sclerosis in ReCONNET and Chair of the EULAR study group on microcirculation in Rheumatic Diseases. She has published numerous works, mainly on Systemic sclerosis and Microcirculation.
More info about System Sclerosis (SSc) can be found here:
reconnet.ern-net.eu/disease-ssc/
The registration to the ERN ReCONNET Newsletter can be done following this link:
reconnet.ern-net.eu/event-and-media-newsletter/