ELF Patient organisation programme

The European Lung Foundation (ELF) brings together patients and the public with respiratory professionals to positively influence lung health. ELF works all year round with a network of national and European patient organisations who take part in the ERS International Congress.

The aim of having patient organisations at Congress is to:

  • present the patient perspective in scientific and educational sessions
  • promote the role of patient organisations
  • strengthen the European community of respiratory patient organisations
  • encourage professionals to engage with patient organisations
  • promote the wider participation of patients and patient organisations in healthcare worldwide.

Patient organisations from across Europe will be located in the World Village and involved in activities taking place at Congress. Meet and find out more about these organisations at the ELF and patient organisation stand and at their hot desks.

The World Village exhibition will be open from:

Sunday 16 to Tuesday 18 September from 09:00 – 17:00 and on Wednesday 19 September from 09:00 – 12:00, with an ELF staff member and patient organisation representatives on the ELF and patient organisation stand at all times.

ELF has put together a varied programme of open and invitation-only events, as well as ensuring patient participation throughout the Congress. See below for full details.

ELF Patient Organisation Networking Day (open to all patient organisations, registration required)

ELF will hold a patient organisation networking day in collaboration with the ERS International Congress. The theme for 2018 is 'Partners in Learning: changing the culture of medical and patient education' with informative and interactive sessions showcasing innovative practice from across Europe and beyond. The day will provide patient organisations and professionals with the opportunity to learn and share their expertise and ideas, and build new collaborations.

The event held on Saturday, 15 September, 11:30 – 17:30, at the Paris Expo Porte de Versailles congress centre is for members of the ELF patient organisation network and is free to attend. Registration is required. If you would like more information or are a patient organisation representative who would like to attend, please contact Jeanette Boyd.

Download the provisional ELF Patient Organisation Networking Day 2018 programme.

Each year, ELF organises activities around Congress that:

  • include patient testimonies, where patients and carers provide an insight into the day-to-day experience of living with a lung condition and related issues, and thoughts and recommendations for improved medical practice and support.
  • address topics of interest to patients and patient organisations, for example on topics such as health-related quality of life, patient-reported outcome measures, and rehabilitation.
  • provide an opportunity for members of the public in the host city to learn more about their lung health.
  • relate to the ELF/ERS Healthy Lungs for Life themes of clean air, air quality, occupational health and smoking cessation.

 

Patient track: Scientific and educational sessions

Please note that Congress registration is required to access scientific and educational sessions. An additional fee is required to attend Postgraduate courses and Professional development workshops. More details on registration for courses and workshops can be found here.

Date

Time

Session title and location

Session type

Patient role

15.09.2018 09:30-11:30 Primary Care Programme 2018 - a new look at healthcare for long-term conditions; Room Terminal 7 Session Patient speakers: Isabel Saraiva (PT)
15.09.2018 09:30-11:30 Sleep-disordered breathing - diagnosis and therapy; Room 7.3Q Postgraduate course (additional fee required) Patient speaker: Piet-Heijn van Mechelen (NL)
15.09.2018 11:30-17:30 ELF Patient organisation networking day; Room 7.3P Networking day Patient organisation networking
15.09.2018 14:00-17:30 Cystic fibrosis: management in adult patients; Room 7.3J Postgraduate course (additional fee required) Patient speaker: Jessica Maetz (FR)
15.09.2018 14:00-17:30 Challenges in the treatment of tuberculosis; Room 7.3L Postgraduate course (additional fee required) Patient speaker: to be confirmed
16.09.2018 08:30-10:30 Asthma among children and adults, focusing on long-term aspects; Room 7.3M Oral presentation --
16.09.2018 08:30-10:30 Primary care management of respiratory conditions; Room 7.3Q Oral presentation --
16.09.2018 08:30-10:30 New sepsis surviving campaign guidelines: back to the "Art of medicine"; 7.1A Scientific session --
16.09.2018 10:45-12:45 Dyspnoea - a multidimensional and multidisciplinary approach Symposium Patient speaker: Kjartan Mogensen (IS)
16.09.2018 10:45-12:45 Towards understanding and managing chronic cough; Room 7.1B Symposium Patient chair: Marta Almagro (ES)
16.09.2018 10:45-12:45 Innovative therapies in asthma and COPD; Room 7.2D Poster discussion --
16.09.2018 10:45-12:45 Imminent global problems in lung cancer require joint action: time for an international alliance!; Room 7.3Z Hot topic --
16.09.2018 14:45-16:45 Interstitial lung disease: an interdisciplinary approach; Room 7.3C Symposium Patient speaker: Klaus Geissler (DE)
16.09.2018 14:45-16:45 Current and evolving tests in lung function: pro/con debate; Room 7.1A Symposium --
16.09.2018 14:45-16:45 Clinical trials in COPD: new results Oral presentation --
17.09.2018 08:30-10:30 Rare lung diseases: Joint ERN-Lung/ERS symposium; Room 7.3Z Symposium Patient speaker: Gergely Meszaros (HU)
17.09.2018 08:30-10:30 Therapeutic breakthroughs - Year in Review; Room 7.1A Year in Review --
17.09.2018 08:30-10:30 Integrating pharmacological and non-pharmacological management in COPD: are we there yet?; Room 7.2A Poster discussion --
17.09.2018 10:45-12:45 Clinical Year in Review; Room 7.3A Year in Review --
17.09.2018 13:00-14:30 Patient forum: Occupational lung disease – professional and patient perspectives; Room 7.3J Patient forum Patient speakers: Bego Demir (TR) and David Batchelor (UK)
17.09.2018 13:00-14:30 New Biologics for Asthma-what patients, what agents, what results, at what cost?; Room 7.3A Lunchtime session Patient panellist: Theo Schilpzand (NL)
17.09.2018 14:45-16:45 Idiopathic pulmonary fibrosis diagnosis: new guidelines; Room 7.1A Guidelines session Patient panellist: Liam Galvin (IE)
17.09.2018 14:45-16:45 New methods for the diagnosis and treatment of lung diseases; Room 7.3B Oral presentation --
17.09.2018 15:00-16:00 Ensuring impactful independent education; Room 7.3R Education forum Patient speaker: Isabel Saraiva (PT)
18.09.2018 08:30-10:30 GINA 2018 and beyond: shaping the future of asthma management; Room 7.1B Scientific session --
18.09.2018 10:45-12:45 New challenges for known diseases – ERS 10 principles for lung health; Room 7.3C Scientific session --
18.09.2018 10:45-12:45 Progress in rare interstitial lung diseases; Room 7.3AA Oral presentation --
18.09.2018 13:00-14:30 Bronchiectasis: new insights into diagnosis and treatment; Room 7.3A Lunchtime session --
18.09.2018 14:45-16:45 The digital ®evolution in respiratory medicine: a personalised approach?; Room 7.3K Symposium Patient chair: Marta Almagro (ES)
18.09.2018 14:45-16:45 Emergent tobacco products and harm reduction: a tobacco solution to a tobacco problem?; Room 7.3C Hot topic HLfL and Patient chair and speaker: Isabel Saraiva (PT)
19.09.2018 08:30-10:30 The complexities of managing mild asthma; Room 7.3K Hot topic --
19.09.2018 08:30-10:30 Asthma phenotypes: does it improve treatment; Room 7.3B Oral presentation --
19.09.2018 10:45-12:45 The asthma-allergy "family"; Room 7.3N Symposium Patient speaker: María Stefánsdóttir (IS)
19.09.2018 10:45-12:45 Palliative care specific for respiratory diseases; Room 7.3C Symposium --
19.09.2018 10:45-12:45 Effects of smoking on asthma Symposium HLfL and Patient speakers: Breda Flood (IE) and Dominique Hamerlijnck (NL)

Healthy Lungs for Life in science and educational sessions

Please note that Congress registration is required to access scientific and educational sessions. An additional fee is required to attend postgraduate courses and professional development workshops. More details on registration for courses and workshops can be found here.

Date

Time

Session title and location

Session type

HLfL theme and patient role

16.09.2018 08:30-10:30 EUREST-PLUS: Tobacco control policy implementation to reduce lung disease; Room 7.1B Scientific session Smoking cessation
16.09.2018  10:45-12:45 Mechanisms of exercise limitation in various respiratory diseases; Room 7.3B Oral presentation Exercise
16.09.2018 14:45-16:45 Health effects of emergent tobacco products and ENDS and systematic reviews focusing on tobacco; Room 7.2C Poster discussion Smoking cessation
17.09.2018 08:30-10:30 Determinants of activity behaviour and the physiotherapist as a physical activity coach in patients with COPD; Room 7.3Q Oral presentation Exercise
17.09.2018 08:30-10:30 Occupational and Environmental Lung Diseases: from early influences, novel exposures to preventative approaches; Room 7.3O Oral presentation Air quality
17.09.2018 14:45-16:45 Exercise is medicine: Testing and treating patients with some effort; Room 7.2B Poster discussion Exercise
17.09.2018 14:45-16:45 Chronic pulmonary aspergillosis: from guidelines to real life implementation; Room 7.3A Hot topic Air quality
18.09.2018 10:45-12:45 Novel findings on biomarkers of tobacco use/exposure, tobacco hazards and tobacco genetics; Room 7.3O Oral presentation Smoking cessation
18.09.2018 14:45-16:45 Emergent tobacco products and harm reduction: a tobacco solution to a tobacco problem?; Room 7.3C Hot topic Smoking cessation; Patient chair and speaker: Isabel Saraiva (PT)
18.09.2018 14:45-16:45 Occupational and Environmental Lung Diseases: Air Quality and Lung Damage; Room 7.3J Poster discussion Air quality
19.09.2018 08:30-10:30 Innovative tobacco cessation approaches and trends on tobacco and e-cigarette use; Room Terminal 7 Oral presentation Smoking cessation
19.09.2018 08:30-10:30 Outcome in relation to environmental exposure and lung function; Room 7.3M Oral presentation Air quality
19.09.2018 10:45-12:45 Effects of smoking on asthma Symposium Smoking cessation; Patient speakers: Breda Flood (IE) and Dominique Hamerlijnck (NL)
19.09.2018 10:45-12:45 Exploring the importance of daily physical activity in chronic respiratory disease; Room 7.2A Poster discussion Exercise
19.09.2018 10:45-12:45 Advances in exercise physiopathology; Room 7.3B Oral presentation Exercise

Public events (open to all)

Date

Time

Event

Venue

14.09.2018 10:00-20:00 Healthy Lungs for Life – public lung testing and activities to raise awareness of smoking cessation and lung health Parvis de l'hôtel de ville, Paris city centre
15.09.2018 10:00-20:00 Healthy Lungs for Life – public lung testing and activities to raise awareness of smoking cessation and lung health Parvis de l'hôtel de ville, Paris city centre

Patient organisation presentations

Again this year, there will be a presentation space at the centre of the World Village. Societies and patient organisations will be giving 15–30 minute presentations, and are a great opportunity for delegates to:
  • learn more about the role of patient organisations in supporting patients and their families
  • hear about specific activities and campaigns
  • ask questions and meet patient organisations in your country or area of disease interest
Presentation dates and times are to be confirmed.

Meetings (invitation only)

Date

Time

Meeting

16.09.2018 13:00-14:30 ELF Patient Advisory Committee
17.09.2018 12:30-14:00 ERN-Lung Meeting
18.09.2018 10:30-12:00 ELF International Patient Advisory Committee
Throughout Congress N/A ERS Task Force and Clinical Research Collaboration meetings with ELF and patient input

For further information on any of these meetings or events, please contact Courtney Coleman (ELF Patient involvement and engagement) or visit the ELF and patient organisation stand in the World Village during Congress.

ELF would also be happy to arrange to meet with any Congress delegates interested in working with them to involve patients in an ERS Task Force, Clinical Research Collaboration (CRC) or EU project.