PAHSSc, Nadir Hastalıklar Gününü Destekliyor




Friday, March 11





09.30-09.45 WELCOME Sue Farrington,
President of FESCA & CEO of SRUK



Professor Marco Matucci,
Chair of WSF & Professor of Rheumatology

Bronwyn Lewis,
Global Head of Patient Engagement

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
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)

Edith Brown
Patient Speaker

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
Consultant Physiotherapist (Rheumatology) at Salford Royal Hospital 


Despo Charalambous
Patient Speaker

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
Consultant Respiratory Physician at Royal Brompton Hospital & honorary senior lecturer Imperial College London

Annelise Roennow
Patient Speaker

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
Patient Speaker 


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

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
– the gut and the microbiome in Systemic Sclerosis

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


Saturday, March 12




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
Patient Speaker

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
Patient Speaker 

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
Consultant Rheumatologist Birmingham Children’s Hospital and The Royal Free Hospital London


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
Patient Speaker

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,
Patient Speaker

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
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

12.50-13.00 CONCERENCE CLOSE Sue Farrington
President of FESCA & CEO of SRUK


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