Systemic sclerosis (SSc) patients and doctors: A win win alliance

Short description
The webinar aims at illustrating that most of the decisions taken together by a clinician and a patients lead to better outcomes and adherence.
More info, resources, and details about SSc can be found here: reconnet.ern-n...
Speakers
- Prof. Vanessa Smith is Head of Clinics at the Ghent University Hospital since 2011 and Associate Professor of Rheumatology at the Ghent University since 2014. Prof. Smith is member of the Steering committee of the European Reference Network on rare connective tissue and musculoskeletal diseases (ERN- ReCONNET) since 2016 and executive board member as coordinator of SSc since 2017. She serves as Belgian national expert contact point for Health Authorities and is Chair of the Flemish network on rare connective tissue diseases. Prof. Smith was awarded the 2011 Belgian Cristina Pivetta prize for “Contribution to treatment strategies and diagnostic algorithms for patients with SSc” and received a grant from the Fund for Scientific Research Flanders for her research on capillaroscopy.
Prof. Smith currently holds a position as Senior Clinical Investigator of the Research Foundation Flanders, and is chair of the EULAR study group on Microcirculation in Rheumatic diseases. She is an organizing/scientific board member of the 2nd up the 11th EULAR courses on capillaroscopy and chairs the EULAR network of training and research, Ghent center for microcirculatory imaging. Since 2020 Prof. Smith is member of the scientific organizing committee of the SSc World Congresses as well. At the same time, Prof. Smith is co-editor of several books, as well as co-author of book chapters and several manuscripts on SSc/microcirculation (more than 200 publications with a disease specific H-index of 51) and is editorial board member of ‘Journal of Scleroderma and Related disorders’, ‘Rheumatology’ and the ‘European Journal of Clinical Investigation’.
- Prof. Marco Matucci-Cerinic is Full Professor of Rheumatology and Medicine at the Department of Experimental and Clinical Medicine, Chairman of the IRB committee of the Tuscan region. Is a Scientific Consultant at Hospital San Raffaele. He works in the Rheumatology Division of the Careggi University Hospital of Florence. The professor is a member of the prestigious British Royal College of Physicians, the American College of Rheumatology, the Italian Society of Rheumatology and is an honorary member of the British Society of Rheumatology. Dr Matucci-Cerinic has published more than 1300 peer review manuscripts widely in the field of rheumatology, particularly on the pathogenesis, clinical features and treatment of scleroderma, on spondyloarthritis and on osteoarthtritis. He has also served on various international and national committees_ in particular as EULAR General Secretary, as executive secretary of ILAR, as Chairman of the European Scleroderma Trial and Research Group (EUSTAR) and vicepresident of the Scleroderma Clinical Trial Consortium (SCTC) . He is currently chairman of the World Scleroderma Foundation (WSF) and Editor in Chief of the Journal of Scleroderma & Related Diseases (JSRD).
- ePAG Ilaria Galetti has been coping with Systemic Sclerosis since 1996. The diagnosis changed her life, of course, but on the other hand gave her the opportunity to learn and work for herself and other patients, with the aim of giving equal possibilities to all patients, wherever they have the chance to live.
She hardly worked at national level with GILS (Italian Systemic Sclerosis Organization), and then through FESCA and EURORDIS at European level, where she is very active. She attended both EURORDIS Summer and Winter Schools on research and clinical trials, the ISS school on Registries for Rare Diseases and several other courses, keeping her knowledge always updated. As soon as she heard about European Reference Networks she immediately understood that the right place to be was there.
- ePAG Sue Farrington is currently President of FESCA, the Federation of European Scleroderma Associations, and Chief Executive of SRUK. Both organisations work with the community to advocate for improvements in the healthcare system and to accelerate the benefits of research.
Sue 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 is a member of the UCL Partners Academic Health Science Centre Infection, Immunity and Inflammation Patient and Public Advisory Group.
Sue has seen first-hand the impact that a condition like Systemic Sclerosis can have on the individual and their family.