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.
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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
- 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
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.