Aspergillosis is a rare disease, which can make it tricky to advocate for improvements in healthcare and policy. When patients in similar situations across different countries and different diseases link together, it gives them a louder collective voice.

The European Lung Foundation is an international patient-led organisation representing patients with many different lung conditions including sarcoidosis, severe asthma, bronchiectasis and pulmonary fibrosis. It runs a very active network of patient advocacy groups, which accepted NAC’s patient support group as a member in 2022.

ELF co-ordinates ‘task forces‘ of patient volunteers who tell their stories to journalists and medical congresses, as well as being involved in shaping new guidelines and research. They also award grants for awareness activities, such as the award-winning Healthy Lungs for Life scheme – click here to download an advocacy pack.

ELF also organises various patient conferences that are of interest to our patients, which you can attend online for free or watch later on demand. These usually involve a mixture of patient stories, latest research and practical tips for living with the condition. Several of the most relevant are listed below, or you can find the full list on their website.