ABOUT

Welcome to ELF Patient Organisation Day 2020

Today we will focus on how living with a chronic lung condition impacts on our psychosocial wellbeing and explore how we can overcome barriers to achieving a healthier mind and body. We hope you will have an inspiring and informative event.  Browse the platform to access the link to the Main Room where all the talks take place, read about our speakers, access our delegate list and view the posters describing patient organisation activities and research.

Listen to a welcome message from Thierry Troosters, ERS President below.

Schedule

All times are in CEST

Morning Session

10:50

Keynote speakers and Q&A

Keynote speaker 1 - Anna Spathis

Improving well-being: moving from disease to symptom focused support

Keynote speaker 2 - Francesco Pagnini

Psychological aspects and mind/body interventions for people with respiratory diseases

11:30

Break

11:40

Delegate presentations and Q&A

Susanne Shanks - Support provided to PCD patients and families during COVID-19 pandemic and challenges faced.

Frits Franssen - Pulmonary rehabilitation for post-acute COVID-19 and how we did this in our center.

Filippo Martone & Gianluca Ziosi - Sarcoidosis and SARS-CoV-2 in Italy: what does the pandemic teach us?

12:20

Breakout discussion groups - The impact of COVID-19 on patient organisations and those they support.

Please join this using the link you received by email for the breakout session or by clicking on the link labelled breakout session at the top of this page.

Breakout session questions: 

1. How has the COVID-19 pandemic changed what you do?

2. Has anything worked well for you/your organisation during this time?

3. Are there things that you will continue to do or plan to develop over the longer-term

as a result of COVID-19?

12:45

Lunch

13:35

Easy and fun exercises for people with lung conditions (video demonstration with optional participation) – Kjeld Hansen

Afternoon Session

13:45

Delegate presentations

Kjeld Hansen - Physical exercise and mental well-being.

Peter Bryce - Psychosocial impact of our holiday home for members.

Shane Fitch - MyAVA Asthma Virtual Assistant 

Q&A with delegate speakers

14:30

Break

14:45

Video:  Anita Simonds, ERS President-elect

14:50

Keynote speaker - James Chalmers

Lessons learned from COVID-19 and a view of the future for people with lung conditions.

Q&A with keynote speaker

15:15

ERS President Message

Thierry Troosters

15:20

ELF Chair farewell

Isabel Saraiva

15:25

Wrap-up

Kjeld Hansen (ELF Chair-elect)

15:30

End of day

 
 
 

Hosts

Isabel Saraiva

ELF Chair

Pippa Powell

ELF Director

Keynote Speakers

Francesco Pagnini

Ph.D. in Clinical Psychology, Psy.D. in Integrated Psychotherapy, Francesco is an Associate Professor at Università Cattolica del Sacro Cuore (Milan, Italy), and Associate at Harvard University (Cambridge, MA, USA). His main research interest is the connection between mind and body. In particular, he is interested in studying and developing psychological interventions to help change the course of physical illnesses, including respiratory diseases, amyotrophic lateral sclerosis, and multiple sclerosis. He has collaborated with various agencies, including NASA and the European Space Agency, for the application of mind/body techniques for deep space exploration. 

Anna Spathis 

University Lecturer, University of Cambridge; Honorary Consultant, Cambridge Breathlessness Intervention Service, Cambridge University Hospitals NHS Foundation Trust, UK

Anna Spathis is the lead consultant for the Cambridge Breathlessness Intervention Service. This unique evidence-based service, set up in 2003 by Dr Sara Booth, supports patients to self-manage breathlessness that persists despite best management of the underlying disease causing it. She also has a clinical and research interest in the management of chronic fatigue.

 

James Chalmers

James Chalmers is the British Lung Foundation Chair of Respiratory Research at the University of Dundee, UK and a consultant respiratory physician. He is an expert in lung infections and has been involved in a number of projects during the COVID19 pandemic including leading the ERS Guidelines Task Force for COVID19, being chief investigator for several trials of new COVID19 treatments and answering many of the questions received for the ELF Q&A. He works closely with ELF to involve patients in respiratory infection research through projects such as EMBARC, the European Bronchiectasis Registry, and is an advocate for involving patients in guidelines, clinical research and clinical trials.

Delegate Speakers

Susanne Shanks
Children's representative/ Scottish representative; PCD Family Support Group UK

Gianluca Ziosi – Vice-President, Amici Contro la Sarcoidosi Italia (ACSI)

 

Shane Fitch - CEO & President, Lovexair Foundation, Spain

Frits Franssen

ELF Professional Advisory Board/CIRO, Netherlands

Kjeld Hansen
ELF Chair-elect

Thierry Troosters
ERS President

Filippo Martone, – President, Amici Contro la Sarcoidosi Italia (ACSI)

Peter Bryce

Chairman, Pulmonary Fibrosis Trust, UK

Anita Simonds

ERS President-elect