PAHSSc, Nadir Hastalıklar Gününü Destekliyor
7. SİSTEMİK SKLEROZ DÜNYA E-KONGRESİ 2022 – HASTA KONGRESİ - 2022.03.11-12
2 weeks until our Systemic Sclerosis Patient World Congress
Register for free before 7. March: https://fesca-scleroderma.eu/patient-congress-2022/
#SystemicSclerosisCongress
#SystemicSclerosis #WSC2022 #Scleroderma #WorldSclerodermaCongress2022 #WSC22
PRELIMINARY PROGRAMME
Friday, March 11
Time |
Topic |
Speaker |
| 09.30-09.45 | WELCOME | Sue Farrington, President of FESCA & CEO of SRUK
Professor Marco Matucci, Bronwyn Lewis, |
| 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 Dr. Oliver Distler
Hartmut Haeselbarth Edith Brown |
|
| 10.30-11.15 | BREAKOUTS | |
| Option 1 |
Looking after your hands 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 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 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 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 |
