Who can join a PAG?

“For patients with a rare disease, who live in a small country, it is important and stimulating to look beyond borders. Connecting with other patients and patient organisations offers us the opportunity to do something concrete about the quality of our lives.”

Chris, Sarcoidosis PAG and Sarcoidose.nl

Most of the PAGs are open to new members from European countries. We would like to hear from you if you:

  • Are over 18 and have experience of living with one of the conditions listed below, for example as a patient or a carer.
  • Are resident in a European country.
  • Can communicate in English (spoken and written) – although we plan to eventually offer more opportunities for people to communicate in their native language as we develop the tools to do this.
  • Are interested in improving healthcare and treatment across Europe.
  • Are willing to share your perspective on living with your condition.
  • Have access to a computer and the internet.

If you are interested in joining one of our PAGs or would like further information, please get in touch with our team at info@europeanlung.org.


The Aspergillosis PAG is working with the CPAnet (Chronic Pulmonary Aspergillosis) network of doctors and scientists to help improve diagnosis and care. The PAG are involved in setting research priorities and in identifying information and education gaps for patients and healthcare professionals.


The Asthma PAG works closely with members of SHARP, the pan-European network of healthcare professionals, scientists and industry partners promoting research and education in severe asthma. They work together on a range of projects to improve understanding and treatment, such as surveys to understand patients’ experiences and designing new research studies to better capture the impact of asthma on an individual’s life.


The Bronchiectasis PAG works closely with members of EMBARC, the pan-European network of healthcare professionals and scientists promoting research and education in bronchiectasis. They work collaboratively on a range of projects to raise awareness of, and to improve the management of bronchiectasis including the development of bronchiectasis patient information.

Childhood bronchiectasis

The Childhood Bronchiectasis PAG works to improve the care and management of children with bronchiectasis through close working with healthcare professionals to develop international guidelines and identify priorities for research.

Children’s Interstitial Lung Disease (ChILD)

The ChILD PAG has produced a factsheet and information for parents of children with interstitial lung disease (ChILD) – a term that covers a large group of rare lung diseases, to help raise awareness.

Chronic cough

The Chronic Cough PAG is working with the NEUROCOUGH project, which aims to improve the care and treatment of people with chronic cough and raise awareness about it. Their other activities include lay guidelines for the treatment of chronic cough, and a chronic cough ‘patient journey’ to help clinicians understand patients’ needs.


The chronic obstructive pulmonary disease or COPD PAG works to improve research and care for COPD, with a particular focus on exacerbations or flare-ups. They work closely with healthcare professionals and researchers to identify which aspects of COPD exacerbations affect patients the most, and to improve awareness and education for professionals.


The COVID-19 PAG is working with several COVID-19-related projects. These include the DRAGON project, which aims to use artificial intelligence and machine learning to deliver a decision support system for precise coronavirus diagnosis using CT scanning. It also aims to be able to better predict the outcomes of patients.

Visit the DRAGON website to learn more
Lung cancer

The Lung Cancer PAG is currently involved in a number of projects that aim to improve care and treatment for people with lung cancer. This includes a Task Force to produce guidelines for quality lung cancer care and a project that aims to collect and use data about lung cancer patients across Europe to improve knowledge and provide better care. The PAG has been helping researchers to understand what aspects of the research are most important to patients.

Primary ciliary dyskinesia (PCD)

The PCD PAG is working with the BEAT-PCD (Better Experimental Approaches to Treat Primary Ciliary Dyskinesia) network of clinicians and scientists to help improve diagnosis and care. The PAG are involved in research activities and in identifying information and education gaps for patients and healthcare professionals.

Pulmonary fibrosis (PF)

The PF PAG is discussing their priorities and producing proposals for activities that they can realistically achieve in the areas of early diagnosis, quality of life and access to oxygen.

Pulmonary Hypertension (PH)

The PH PAG formed in 2023 and is currently discussing priorities.


The Sarcoidosis PAG works to raise awareness of this multi-systemic disease and to improve diagnosis, treatment and care. They have been involved in developing information and resources, including input into treatment guidelines.

Meet the Sarcoidosis Patient Advisory Group
Sleep Apnoea

The Sleep PAG is currently involved in a Task Force which is producing technical standards for devices used by patients at home to monitor and collect data about sleep. They have also recently helped to produce guidelines for different sleep apnoea treatments and how they compare to CPAP, and a statement on sleep apnoea and driving.

What is expected of me as a PAG member?

The aim of our PAGs is to help others living with lung diseases, often by advising doctors and researchers or producing resources and information. In a PAG you will be joined by other patients and representatives of patient organisations relevant to your condition.

As a member of a PAG, you will be asked to share your views and experiences on living with your condition. This might include how it impacts your daily life, your thoughts on treatment and aspects of your condition that may not have been researched. You also have the chance to highlight any information gaps or priorities that you think are important to patients and caregivers.

Our groups meet by video call (Zoom or Microsoft Teams) and communicate by email. Representatives from the group may also be invited to face-to-face meetings in Europe. If your health needs would make it difficult for you to attend a face-to-face meeting, we will support you to attend remotely.

Members must agree to keep information about the content and development of projects they are involved with confidential until the outcomes are formally published.

What can I expect as a PAG member?

What is like to be in a PAG?

ELF will provide support, guidance and training to help you share your perspective and get involved in projects. This includes our European Patient Ambassador Programme (EPAP) which introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully. Modules include working with the media, participating in healthcare conference and supporting research.

We will also cover any costs for getting involved, such as telephone calls, travel and accommodation costs. Please note that this is a voluntary role and we are unable to pay for your time.

You can read about the aims, membership and practical arrangements of our PAGs in our PAG Terms of Reference.

If you are interested in joining a PAG or would like further information, please get in touch.

Contact us