The speakers

Patrizia Toia, Member of the European Parliament (S&D, IT)

Patrizia Toia is an Italian politician and Member of the European Parliament, part of the group of the Progressive Alliance of Socialists and Democrats. She graduated in political science from Università degli Studi in Milan, Italy and later complemented her studies with a degree in strategic planning from the Bocconi University in Milan. Ms Toia’s career started off as Municipal Councilor of Vanzago (Milan), then Director of Planning Service at Lombardy Region and regional Councilor in charge of different portfolios. She was then Member of the Chamber of Deputies and subsequently Member of the Senate between 1996 to 2004.  She is currently Vice-Chair of the Committee on Industry, Research and Energy (ITRE) in the European Parliament. From 2021 to 2022, she was part of the European Parliament’s Delegation to the Conference on the Future of Europe (COFOE). Ms Toia’s interest in health led her to become a member of the MEP Heart Group, MEPs Against Cancer Group, member of the European Parliament Intergroup on Cancer as well as substitute member of the Special Committee on Beating Cancer (BECA).

Sue Farrington is currently President of the Federation of European Scleroderma Associations (FESCA) and Chief Executive of Scleroderma & Raynaud’s UK (SRUK). In addition, Sue is Co-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.  She is a member of the UCL Partners Academic Health Science Centre Infection, Immunity and Inflammation Patient and Public Advisory Group. Since 2013, Sue has been Chair of the Patient Information Forum, an organisation for people working in consumer health information – championing the role that quality information plays in the delivery of positive health outcomes. Sue has extensive experience in senior leadership roles, working across the private, public and voluntary sector, with a background in strategic marketing & communications and broadcast journalism.

Eric Hachulla is Professor of Internal Medicine and Clinical Immunology at the Hospital Claude Huriez, University of Lille, France.  His clinical skills concern connective tissue diseases, vasculitis and autoinflammatory diseases with more than 600 published articles. Prof. Hachulla is the head of the Diseases Centre for Rare Systemic autoimmune Diseases North and North-West of France and lead the French Rare Auto-immune and Auto-inflammatory Diseases Network (FAI2R). He has developed several medical educational programmes for patients and medical practitioners. In addition, Prof. Hachulla is the scientific coordinator of the EULAR online courses. Due to his vast experience, he is also a member of the Steering committee of the ERN ReCONNET and is member of several professional bodies including the French Society of Internal Medicine, the ACR, EULAR and EUSTAR.

Vanessa Smith, MD, PhD, 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 a member of the Steering committee of the European Commission Reference Network on Rare CONnective tissue and complex musculoskeletal diseases NETwork (ERN- ReCONNET) since 2016 and Executive board member of ERN- ReCONNET as coordinator of systemic sclerosis since 2017. In addition, she serves as Belgian national expert contact point for Health Authorities and is the Chair of the Flemish network for 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 systemic sclerosis”.

At the same time, Prof. Smith is co-editor of several books, as well as co-author of book chapters, several manuscripts on SSc/microcirculation and is editorial board member of ‘Journal of Scleroderma and Related disorders’ and the ‘European Journal of Clinical Investigation’.

Irini Kessissoglou, PhD is a Researcher in the Unit EU Heath Information Systems at Sciensano.
Dr. Irini Kessissoglou is a researcher and project manager in the Unit EU Health Information System at Sciensano in the Department of Epidemiology and Public Health. She is involved since March 2021 in the TEHDAS Joint Action and in the HealthyCloud EU project. She has been involved in the discussions on the legislative proposal for the EHDS for secondary use and from October onwards she will also be working on the EHDS2 pilot project.

Before joining Sciensano, she was a project officer at the grants office of the Paris Brain Institute and before that a manager in the healthcare department of GS1. From October 2015 through March 2016 she was a Blue Book Trainee at DG GROW.

Dr. Kessissoglou holds a PhD in Neuroscience from the University of Sorbonne in France, completed in 2020, and a Master of Science in Neuroscience from the University College London.

Dr Frances Hall studied Medicine and later gained a DPhil at Oxford University. She gained further research experience as a postdoctoral fellow in California in 1997-2000.

Her clinical training in Rheumatology took place in Cambridge (SHO), at the Hammersmith Hospital (Registrar) and in Oxford (Clinician Scientist). 

Dr Hall was appointed as a Lecturer in Rheumatology and Honorary Consultant at Addenbrooke’s Hospital in Cambridge in 2003 and she was appointed to a substantive NHS Consultant post in 2012.

Dr Hall established the Connective Tissue Disease clinic at Addenbrooke’s Hospital in Cambridge.

She is the Chair and the Clinical Lead of the Eastern Network for Rare Autoimmune Disease, the Chair the East Anglian Rheumatology Society (2019-2022) and represents Midlands and East on the Specialised Rheumatology Clinical Reference Group (2016-22).