Welcome to the 7th Systemic Sclerosis World E-Congress 2022 – Patient Congress
Latest update: 21. February , 2022
Dear Participant,
We cannot wait for you to join us at the World Scleroderma Patient Congress 2022 on Friday 11th March and Saturday 12th March for two mornings of presentations and interactive sessions covering the most current information on scleroderma.
Every other year, FESCA host the World Scleroderma Patient Congress to discuss important developments in medicine and strategies for supporting those with scleroderma. The Congress happens alongside the World Scleroderma Congress for clinicians, organised by the World Scleroderma Foundation.
We have carefully selected each of the session speakers and chairs so that they effectively represent patients, medical professionals, and doctors from the scleroderma community across the world.
We will be posting regular social media and website updates in the run up to the conference so make sure to keep your eyes peeled on our platform to keep informed on everything you can expect!
Best regards,
Sue Farrington, President
FESCA – Federation of European Scleroderma Associations aisbl.
Download the Delegate Package
Download the delegate package that contains information on our sponsors, speakers, programme and more.
PRELIMINARY PROGRAMME
Friday, March 11
Time |
Topic |
Speaker |
| 09.30-09.45 | WELCOME | Sue Farrington, President of FESCA & CEO of SRUK
Professor Marco Matucci, Annie Gilbert, |
| 09.45-10.30 | ROUNDTABLE | |
|
Working with industry – opportunities & Challenges This Roundtable discussion will explore the opportunities and challenges of a multi-stakeholder approach to collaboration with industry. This will be approached from an industry perspective as well as a patient and a clinician viewpoint. |
Sue Farrington President FESCA & CEO SRUK
Dr. Oliver Distler
Hartmut Haeselbarth Edith Brown |
|
| 10.30-11.15 | BREAKOUTS | |
| Option 1 | Looking after your hands Followed by Q&A discussion
This session will cover a range of topics on how best to look after your hand with scleroderma including exercises, puffy fingers, sclerodactyly and calcinosis. |
Professor Marco Matucci Chair of WSF and Professor of Rheumatology
Dr. William Gregory
Despo Charalambous Moderator: Linda Schraven |
| Option 2 | Managing lung involvement Followed by Q&A discussion
This session will explore lung involvement in Systemic Sclerosis and its management from the perspective of Professor Denton and Dr Renzoni. |
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 Annelise Roennow Moderator: Stephanie Munoz |
| Option 3 | 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 on the topic. |
Dr. Ivan Foeldvari Hamburg Centre for Paediatric Rheumatology
Catarina Leite
Moderator: Kim Fligelstone |
| 11.15-11.30 | COFFEE BREAK | |
| 11.30-12.15 | BREAKOUTS | |
| Option 1 | 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: Ollie Scott |
| Option 2 | Your mental wellbeing Followed by Q&A discussion
This session will explore specific therapies that have been proven to help and how to maintain wellbeing with Scleroderma. |
Professor Linda Kwakkenbos Lecturer and Researcher, Behavioural Science Institute, Clinical Psychology, Radboud University Nijmegen
Dr. Lesley Ann Saketkoo Moderator: Linda Schraven |
| Option 3 | Ssc and COVID Followed by Q&A discussion
Professor Hachulla will discuss their experience of patients dealing with the aftereffects of COVID and the efficacy of vaccines and boosters in relation to those on immunosuppressants. |
Professor Eric Hachulla Department of internal medicine, Huriez Hospital, University of Lille, France
Moderator: Emma Blamont |
| 12.15-13.00 | PLENARY | |
|
What are the latest advances in Systemic sclerosis? – in clinical trials/diagnostics and biomarkers |
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
Moderator: Ilaria Galetti |
|
Saturday, March 12
Time |
Topic |
Speaker |
| 09.30-10.15 | ROUNDTABLE | |
| Accelerating access to treatments. What needs to change? | Health economist, Pharma, Researcher, Patient, Regulatory | |
| 10.15-11.00 | BREAKOUTS | |
| Option 1 | 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 Senior Physician for Dermatology in Cologne
Maureen Sauve |
| Option 2 | 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 Moderator: Ilaria Galetti |
| Option 3 | Paediatric Scleroderma – Transitioning Care Followed by Q&A discussion
Dr Pain and Dr. Derrett-Smith will discuss the transition from paediatric to adult care for patients with localized and systemic sclerosis. |
Dr. Clare Pain Paediatric Rheumatology Consultant at Alder Hey Children Hospital
Dr Emma Derrett-Smith
Moderator: Emma Pearson |
| 11.00-11.15 | COFFEE BREAK | |
| 11.15-12.00 | BREAKOUTS | |
| Option 1 | 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 Rheumatology and Department Public Health Bern University Hospital and University of Basel
Annelise Roennow Moderator: Felicia Whiteley |
| Option 2 | Pain management Followed by Q&A discussion
Dr Carina Boström will explore the effects of physical exercise with Systemic Sclerosis 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, |
| Option 3 | Oral Health Followed by Q&A discussion
Dr Largiadèr is an orthodontist and specialist oral health. They have previously worked with Scleroderma patients on the specialised requirements in this topic. |
Dr. Yasmin Largiadèr Orthodontist and oral and dental care specialist, Grünwald, Germany
Gabi Verzi Moderator: Steffi Säurig |
| 12.00 | PLENARY | |
|
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 Moderator: Sue Farrington |
|
| 12.50-13.00 | CONCERENCE CLOSE | Sue Farrington President of FESCA & CEO of SRUK |
