ELF and ERS launched a Patient Priorities project in 2015 to develop patient-led guidance on what matters most to people affected by lung disease across Europe.
The first Patient Priorities projects have focused on the following areas:
- Lung cancer
- Lymphangioleiomyomatosis (LAM)
- Children with interstitial lung disease (ChILD)
As part of the Patient Priorities lung cancer project, a Patient Advisory Group (PAG) was brought together to provide guidance and input into the project and is made up of individuals diagnosed with lung cancer, caregivers and lung cancer patient organisation representatives.
The group includes individuals from the Czech Republic, Denmark, Germany, Ireland, Italy, Poland, Spain and the United Kingdom.
A range of guidance has been produced following consultation surveys and workshops with people across Europe and healthcare professionals working in this field.
A new lung cancer website to improve access to information and support that people affected by lung cancer in Europe have told us they need was launched in August 2016. It is a key resource for European Respiratory Society (ERS) members to signpost their patients to.
ELF and ERS have been working with women living with lymphangioleiomyomatosis (LAM) and LAM patient organisations to develop patient-led guidance on what matters most to people affected by LAM. A patient advisory group consisting of women with experience of LAM from Denmark, Germany, Italy, Ireland, the Netherlands, Norway, Sweden and the United Kingdom helped to guide the project.
A survey and workshop were developed jointly by ELF and the European LAM Federation to identify and discuss the top 10 priorities for the diagnosis, treatment and care of women living with LAM.
A paper highlighting these priorities has been published in ERJ Open Research.
Read the full paper.
A website providing information and linking to resources for people affected by the condition across Europe was launched in June 2017.
We have launched a website of information about bronchiectasis for people living with the condition across Europe.
We developed this with the expertise of ERS medical experts in the field who are members of EMBARC, a pan-European network promoting education and research in bronchiectasis, as well as members of our bronchiectasis patient advisory group who have daily experience of living with the condition.
Representatives from our patient advisory group have also been involved in a range of bronchiectasis research and awareness raising projects including:
- Development of new ERS guidelines on bronchiectasis
- Development of research priorities to influence future research looks to improve the situation for people with bronchiectasis. An article was published in European Respiratory Journal.
- World Bronchiectasis Conferences: read experiences from patients attending the 2017 and 2016 Conferences.
Children’s Interstitial Lung Disease
We have launched a website for parents of children with interstitial lung disease (ChILD). It has been developed with the expertise of ERS medical experts in the field and members of our ChILD parent advisory group.
Please let us have your feedback on the new website which you can find at www.europeanlunginfo.org/child