ELF Patient organisation programme 2016
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 4 to Wednesday 7 (opening times to be confirmed), with an ELF staff member and patient organisation representatives on the ELF and patient organisation stand at all times.
ELF have 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.
NEW THIS YEAR
ELF Patient Organisation Networking Day (open to all patient organisations, registration required)
For the first time this year, ELF will hold a Patient Organisation networking day in collaboration with the ERS International Congress. The day will be exclusively for patient organisations, with the aim to facilitate learning and networking with patient organisations.
The event held on Saturday, 3 September, 11.00-17.00, at the ExCeL congress centre 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 email Kerstin Morrison.
11:00 - Registration
12:00 - Singing for lung health with British Lung Foundation (BLF)
12:30 - Lunch, networking and posters
13:00 - Welcome from ELF Chair, Dan Smyth and ERS President, Jørgen Vestbo
13:10 - Keynote speaker: Rosamund Snow, patient editor, British Medical Journal (BMJ)
13:30 - ELF update
14:15 – Workshops:
- Using social media effectively for your organisation
- Singing for lung health
- The European Patient Ambassador Programme: a tool for your organisation
- EU funding opportunities for patient organisations
15:15 – Coffee and posters
15:45 - Open debate
17:10 - Closing remarks from Dan Smyth
17:15 – End
17:45-21.00 - ERS Congress opening ceremony and welcome reception
Please click on the below headings for details of all ELF activities at this year’s Congress.
Public events (open to all)
- Friday 2 and Saturday 3, 10.00-18.00 - Trafalgar Square, London City centre - public lung testing and activities to raise awareness of air quality and lung health (part of the Healthy Lungs for Life campaign)
- Monday 5 September at 18:00-20:00 - Royal College of Physicians - Meet the expert evening sessions for patients and the public
- Healthy Lungs for Life roadshow (locations around London) - public lung testing and activities to raise awareness of air quality and lung health
Sessions (some educational sessions require registration and payment)
Each year, ELF highlights scientific and educational sessions that:
- Include patient testimonies, where patients/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.
- Include patients as demonstrators, where patients help educate healthcare professionals by answering questions about their condition, treatment, management and side-effects, and demonstrate the use of medical equipment such as inhaler techniques and thoracic ultrasound.
- 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.
- Relate to the ELF/ERS Healthy Lungs for Life theme of clean air and air quality.
Patient testimonies in scientific sessions:
- Mon 5 Sept, 10.45-12.45 - Driving investment and innovation in asthma research
- Tues, 6 Sept, 13.00-14.00 - Patient forum: Communicating the impact and risk of air pollution to respiratory patients
- Tues 6 Sept, 14.45-16.45 - Living and dying with lung disease - Communication and palliative care in end-stage lung disease
- Tues 6 Sept, 14.45-16.45 - Future challenges in pulmonary arterial hypertension - An ERS/ESC, and Patient Organisation PAH Europe joint symposium
- Tues 6, Sept, 10.45-12.45 - The management of acute exacerbations of COPD
- Tues 6 Sept, 08.30-10.30 Urban air pollution and human health - Healthy Lungs For Life (HLfL)
- Wed 7 Sept, 10.45-12.45 - Occupational lung disease worldwide - Healthy Lungs For Life (HLfL)
Patient speakers and demonstrators in educational sessions:
- Sat, 3 Sept, 09:30-13:00 – Personalised medicine in paediatric asthma
- Sat, 3 Sept, 16:00-16:45 - Pulmonary haemodynamics during exercise
- Sat, 3 Sept, 14:00-17:30 - Breathlessness over the life course
- Sun, 4 Sept, 07:00-08:15 - Children’s interstitial lung disease
- Sun, 4 Sept, 13:00-14:00 - Pulmonary arteriovenous malformations
- Sun, 4 Sept, 8:00-16:50 - Skills workshop, Thoracic ultrasound (3 workshops)
- Tues, 6 Sept, 10:45-12:45 - Symposium: The management of acute exacerbations of COPD
- Tues, 6 Sept, 10:45-12:45 - Oral Presentation: How to choose the best strategy with noninvasive ventilation
- Tues, 6 Sept, 10:45-12:45 - Oral Presentation: New approaches and finding in smoking cessation
- Tues, 6 Sept, 14:45-16:45 - Symposium: Future challenges in pulmonary arterial hypertension An ERS/ESC, and Patient Organisation PAH Europe joint symposium
- Tues, 6 Sept, 14:45-16:45 - Symposium: Living and dying with lung disease Communication and palliative care in end-stage lung disease
- Tues, 6 Sept, 14:45-16:46 - Symposium: Transition to adult care: what we can learn from cystic fibrosis?
- Tues, 6 Sept, 14:45-16:45 - Oral Presentation: IPF clinical I
- Wed, 7 Sept, 08:30-10:30 - Hot topics: Immunity in COPD time for questions?
- Wed, 7 Sept, 08:30-10:30 - Session: Health effects related to air pollution ERS/BTS joint session
- Wed, 7 Sept, 08:30-10:30 - Oral Presentation: Paediatric asthma: from amniotic fluid to dirty streets
- Wed, 7 Sept, 10:45-12:45 - Symposium: Occupational lung disease worldwide
- Wed, 7 Sept, 10:45-12:45 - Oral Presentation: Monitoring airway diseases with different tools
Presentations (open to all)
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)
- ELF International Patient Advisory Committee meeting (to be confirmed)
- ERS Task Force and Clinical Research Collaboration meetings with ELF and patient input (to be confirmed)
- EU-funded project meetings (to be confirmed)
- ELF Patient Advisory Committee meeting (to be confirmed)
For further information on any of these meetings or events, please contact Sarah Masefield, ELF Patient involvement and engagement (firstname.lastname@example.org) or visit the ELF and patient organisation stand in the World Village during Congress.
Sarah would also be happy to arrange to meet with any Congress delegates interested in working with ELF to involve patients in an ERS Task Force, Clinical Research Collaboration (CRC) or EU project.