09.30am

Simultaneous Translation into French, German, Italian, Hungarian, Spanish & Swedish

Sue Farrington
President of FESCA & CEO of SRUK

Professor Marco Matucci
Chair of WSF & Professor of Rheumatology

Annie Gilbert
Global Patient & Site Engagement Lead, Boehringer Ingelheim

Working with Industry - Opportunity & Challenges

This roundtable will explore the opportunities and challenges of a multi-stakeholder approach to collaboration with industry. This session will bring together views and insights from a patient, clinician, and industry perspective to consider possible solutions.

Sue Farrington
President FESCA & CEO of SRUK

Dr Oliver Distler
Professor of Rheumatology and Director of the Department of Rheumatology and the Centre of Experimental Rheumatology, University of Zurich, Switzerland

Hartmut Haeselbarth
Senior Legal Counsel (Corporate Therapeutic Areas) Boehringer Ingelheim

Edith Brown
Patient Speaker

Option 1

Simultaneous Translation into French, German, Italian, Hungarian, Spanish & Swedish

Looking After Your Hands
Followed by Q&A discussion

This session will cover how best to look after your hands, covering a range of topics including puffy fingers, sclerodactyly & calcinosis, as well as practical ways to help such as exercises.

Professor Marco Matucci
Chair of WSF and Professor of Rheumatology

Dr William Gregory
Consultant Physiotherapist (Rheumatology) at Salford Royal Hospital

Despo Charalambous
Patient Speaker

Moderator: Linda Schraven

Managing Lung Involvement
Followed by Q&A discussion

This session will explore lung involvement in Systemic Sclerosis and its management.

Professor Chris Denton
Professor of Experimental Rheumatology at UCL and Consultant Rheumatologist and Head of the Centre for Rheumatology, Royal Free Hospital London

Dr Elisabetta Renzoni
Consultant Respiratory Physician at Royal Brompton Hospital & Honorary Senior Lecturer Imperial College London

Annelise Roennow
Patient Speaker

Moderator: Stephanie Munoz

Paediatric Scleroderma - Supporting families & children with a diagnosis
Followed by Q&A discussion

Dr. Foeldvari will discuss what support should be offered to families and children whilst a patient speaker will give their perspective using their own experience.

Dr Ivan Foeldvari
Hamburg Centre for Paediatric Rheumatology

Catarina Leite
Patient Speaker

Moderator: Kim Fligelstone

Option 1

Simultaneous Translation into French, German, Italian, Hungarian, Spanish & Swedish

PAH - the heart in SSc
Followed by Q&A discussion

Dr. Church will be providing an overview of what PAH is in scleroderma, the signs, and symptoms; how it is diagnosed; the latest treatment options as well as practical ways to self-manage and look after yourself.

Dr Colin Church
Consultant in Pulmonary Vascular and Respiratory Medicine

Moderator: Helena Eynon

Your mental wellbeing
Followed by Q&A discussion

This session will explore tools for coping with scleroderma symptoms and improving wellbeing.

Professor Linda Kwakkenbos
Lecturer and Researcher, Behavioural Science Institute, Clinical Psychology, Radboud University Nijmegen

Dr Lesley Ann Saketkoo
Associate Professor of Medicine, Professor of Honors Studies Director, New Orleans Scleroderma and Sarcoidosis Patient Care and Research Centre

Lucy Reeve
Patient Speaker

Moderator: Linda Schraven

Option 3

20-minute presentation and 10-minute Q&A

SSc and COVID
Followed by Q&A discussion

Professor Hachulla will discuss his experience of treating patients and managing the aftereffects of COVID, the efficacy of vaccines and boosters for people on immunosuppressants.

Professor Eric Hachulla
Department of Internal Medicine, Huriez Hospital, University of Lille, France

Moderator: Emma Blamont

What are the Latest Advances in Systemic Sclerosis

• in clinical trials/diagnostics and biomarkers
• the gut and the microbiome

Dr. Oliver Distler
Professor of Rheumatology and Director of the Department of Rheumatology and the Centre of Experimental Rheumatology at the University of Zurich, Switzerland

Dr. Anna-Maria Hoffman-Vold
Head of SSc Research and the SSc and CTD-ILD outpatient clinic at the Oslo University Hospital

Moderator: Ilaria Galetti

Prof. Giuseppe Turchetti
PhD, Fulbright Scholar, Professor of Economics and Health Management, Scuola Superiore Sant’Anna

Daniel De Schryver
Patient Engagement and Advocacy Lead, Janssen EMEA (Europe, Middle East and Africa)

Russell Wheeler
PCWP EMA Committee and Patient Advocate at ERN-EYE, EURORDIS and Leber's Hereditary Optic Neuropathy Society

Rita Schriemer
Patient advocate for NVLE and coordinator patient research partner rheumatology studies at the Sint Maartenskliniek Nijmegen

Option 1

Simultaneous Translation into French, German, Italian, Hungarian, Spanish & Swedish

The Skin in Scleroderma
Followed by Q&A discussion

This session will cover skin involvement in scleroderma and how best to manage it.

Prof Dr Pia Moinzadeh (DE)
Senior Physician for Dermatology in Cologne

Maureen Sauve
Patient Speaker

Moderator: Gemma Cornwell

Newly Diagnosed - what you need to know
Followed by Q&A discussion

Dr. Pope will explore what every newly diagnosed scleroderma patient should know.

Dr Janet Pope
Professor of Medicine in the Division of Rheumatology at the University of Western Ontario

Stephanie Munoz
Patient Speaker

Moderator: Ilaria Galetti

Paediatric Scleroderma - Transitioning Care
Followed by Q&A discussion

Dr. Pain and Dr Derrett-Smith will discuss the transition from paediatric to adulto care for patients with localised and systemic sclerosis

Dr Clare Pain
Paediatric Rheumatology Consultant at Alder Hey Children Hospital

Dr Emma Derrett-Smith
Consultant Rheumatologist, Birmingham Children's Hospital and The Royal Free Hospital, London

Moderator: Emma Pearson 

Option 1

Simultaneous Translation into French, German, Italian, Hungarian, Spanish & Swedish

How to manage your fatigue
Followed by Q&A discussion

Dr. Kocher will discuss non-pharmacological recommendations and self-management strategies to manage fatigue related to Systemic Sclerosis

Dr Agnes Kocher
Department of Nursing, Inselspital Bern University Hospital and Institute of Nursing Science, Department Public Health, University of Basel, Switzerland

Annelise Roennow
Patient Speaker

Moderator: Felicia Whiteley

Pain Management
Followed by Q&A discussion

Dr. Carina Boström will explore the effects of physical exercise in managing pain

Dr Carina Boström
Associate Professor and Senior Lecturer at the Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, and Physiotherapist and affiliated to Karolinska University Hospital

Michaela Linkova
Patient Speaker

Moderator: Ann Tyrrell-Kennedy

Oral Health
Followed by Q&A discussion

Dr Largiadèr is an orthodontist and specialist in oral health. She previously worked with Scleroderma patients on the specialised requirements in this area.

Dr Yasmin Largiadèr
Orthodontist and oral and dental care specialist, Grünwald, Germany

Gabi Verzi
Patient Speaker

Moderator: Steffi Säurig

Why do Patient Reported Outcome Measures Matter?

Dr. Khanna will discuss the value and importance of Patient Reported Outcome Measures and Edith Brown will give her viewpoint as a scleroderma patient.

Dr Dinesh Khanna
Professor of Medicine and Director, University of Michigan Scleroderma Programme

Edith Brown
Patient Speaker

Moderator: Sue Farrington