ELF’s plans for 2020
ELF has a lot of exciting activities planned for the year ahead. We are looking forward to continuing our work alongside respiratory professionals, patients, patient organisations and the public to provide further information and resources to positively influence lung health.
New Patient Priorities website on sarcoidosis
We will be launching a new Patient Priorities website on sarcoidosis in April 2020, with information and resources in multiple languages for people diagnosed with sarcoidosis and their caregivers. It will also signpost to additional resources and support for people in their own country who are living with this rare condition. The website is being developed with our sarcoidosis patient advisory group in collaboration with sarcoidosis medical experts to ensure the information is medically accurate and relevant to people with sarcoidosis.
As our online self-learning resource, the European Patient Ambassador Programme (EPAP) was launched 6 years ago, we are currently undertaking a comprehensive content review of its 8 modules to ensure the information provided fully reflects the areas of healthcare it aims to cover.
EPAP helps individuals with any medical condition to access the basic skills and knowledge needed to interact with healthcare professionals, policymakers, researchers and journalists; and this review will ensure it remains useful for individuals wanting to get more involved in representing themselves or others to improve care and treatment.
ERS Congress 2020
This year’s ERS International Congress will take place on 5-9 September 2020 in Vienna, Austria. We are looking forward to welcoming patients and patient organisation representatives to take part in various activities supporting patient involvement in respiratory health.
Healthy Lungs for Life – Vienna 2020
During this year’s ERS Congress in Vienna, we will be holding a free lung function testing event as part of the Healthy Lungs for Life campaign. The main event will take place at Wien Mitte The Mall on 4 and 5 September 2020, with potentially other locations to be confirmed. The activities will focus on the four key themes: #BreatheCleanAir, #BeSmokeFree, #TakeTheActiveOption and #Vaccinate.
Healthy Lungs for Life – global
This year we will continue to expand the Healthy Lungs for Life campaign globally.
We encourage everyone to hold events to spread the important messages of the campaign to local communities. To support events around the world, we are offering grants of €1,000 to individuals, not-for-profit organisations, patient groups and respiratory professionals.
The first round of grants is now open. Find out more and submit your application.
New website development
Over the course of 2020, we will be working on the development of a new, more ‘people-focused’ website, which we aim to launch by the end of the year. The branding will be in line with the European Respiratory Society (ERS)’s new website, which they are also developing, ensuring better accessibility for healthcare professionals around the world, especially with regards to engaging with patients.
All our factsheets are developed with the help of healthcare professionals and patients. This year we will publish four new factsheets, which will be on the topics of:
- Tobacco harm reduction: March 2020
- Mental wellbeing when living with a lung condition: June 2020
- Physical activity and lung health infographic: September 2020
- Lung cancer screening: December 2020
We aim to translate our factsheets into as many languages as possible. Over the next few months, we will be assessing which languages our factsheets are viewed and downloaded in the most to decide which languages to translate our future factsheets into. We therefore encourage patients, professionals and patient organisations to share our factsheets using the PDF links with your networks to ensure that we continue to translate our factsheets into as many languages as possible.
View our factsheet page and scroll to the appropriate country flag to find factsheets in your language.
ELF is currently/will be actively involved in many projects over the course of 2020, including a total of:
- 25 Task Forces – topics include: new guidelines on how to diagnose asthma in adults; understanding the factors which are important to patients when managing COPD exacerbations; new guidelines on the management of childhood bronchiectasis; new guidelines on the treatment of sarcoidosis
- 13 Clinical Research Collaborations (CRCs) – topics include: understanding more about the information needs of patients and family members on mechanical ventilation; understanding challenges of care, treatment and living with alpha-1 antitrypsin disorder
- 3 lay guidelines: chronic cough, severe asthma and bronchopulmonary dysplasia (BDP)
ELF is also part of four EU projects including:
We will be talking more about these projects in the next newsletter.