“Can patients do more than just cope with this condition?”
The answer is yes.
The European Lung Foundation (ELF)
and its
Aspergillosis Patient Advisory Group (PAG)
give patients and carers a chance to contribute to something bigger: better awareness, better information, better research, and better care.
What is ELF?
ELF is a Europe-wide organisation that brings patients, carers, healthcare professionals and researchers together to improve lung health information, treatment and care.
One of ELF’s strongest advantages is that it works across Europe, not just in one country. It also makes key information available in several languages, helping more people access reliable information about lung conditions, including aspergillosis.
You can read ELF’s patient information on aspergillosis here:
Aspergillosis – European Lung Foundation.
What is the Aspergillosis Patient Advisory Group?
The Aspergillosis PAG is part of ELF’s wider network of
Patient Advisory Groups.
These groups bring together people with experience of specific lung conditions, or experience as carers, so that patient views can help improve treatment and healthcare.
The Aspergillosis PAG works to raise awareness of aspergillosis and improve diagnosis, treatment and care. It also works alongside healthcare professionals and researchers involved in the Chronic Pulmonary Aspergillosis Network (CPAnet), helping identify research priorities and information gaps for both patients and professionals.
Why does this matter?
Aspergillosis is still not well understood in many places. Diagnosis can be delayed, information can be hard to find, and patients often feel that few people truly understand what living with the condition is like.
By involving patients and carers directly, ELF helps ensure that real-life experience is not left out of the conversation. This can influence education, awareness work, research priorities and wider discussions about care across Europe.
What is in it for the patient or carer?
This is an important question, because volunteering your time and energy is a big ask, especially when you are already managing illness, fatigue, appointments, uncertainty or caring responsibilities.
So it is only fair to be clear and honest about what people may gain from taking part.
1. A chance to make your experience count
Many people with aspergillosis have learned difficult lessons the hard way. Getting involved gives you a chance to turn that experience into something useful — helping improve information, shape priorities and make life a little easier for future patients.
2. Better understanding and confidence
Being involved can help you better understand how research, awareness work and patient representation operate. Some people find that this gives them more confidence when speaking about their condition and navigating their own care.
3. Connection beyond your local area
Because ELF is Europe-wide, patients are not limited to the perspective of one hospital, one region or one country. For people living with a relatively uncommon condition, that wider connection can feel valuable and reassuring.
4. The opportunity to be heard
Many patients are used to feeling overlooked. PAGs are designed so that patient and carer perspectives are actively included in projects and discussions, rather than being an afterthought.
5. A sense of purpose
Some people find that involvement helps them move from simply living with a difficult condition to doing something constructive with that experience. It will not suit everyone, but for some it can be meaningful.
6. Support and training
ELF says it provides support, guidance and training to help people share their perspective and get involved in projects. It also encourages interested patients and carers to use its free online European Patient Ambassador Programme (EPAP), which introduces the skills and knowledge needed to represent yourself and others effectively.
What it is not
It is also important to be realistic.
- It is not medical care.
- It does not replace your doctor, nurse or specialist team.
- It is not a route to faster treatment.
- It is not a paid role.
ELF states that PAG involvement is voluntary and that it is unable to pay for people’s time.
Who can join?
ELF says most PAGs are open to new members from European countries. In general, people are invited to get involved if they are over 18, have experience as a patient or carer, live in a European country, can communicate in English, are interested in improving healthcare and treatment across Europe, and are willing to share their perspective.
That said, this should not feel like an all-or-nothing commitment. Not everyone can give a lot of time, and health can change. Even modest involvement can still be worthwhile.
Why mention this to our groups?
Many people in aspergillosis support communities have exactly the kind of insight that is valuable here: the reality of diagnosis, treatment, daily management, side effects, uncertainty, isolation, and learning how to cope.
Those experiences matter. They can help improve what is researched, what is explained, and how future patients are supported.
Interested?
You can explore more here:
- ELF information on aspergillosis
- ELF Patient Advisory Groups
- ELF Aspergillosis Patient Advisory Group
You do not need to be an expert. You do not need to be highly confident. You do not need to commit to everything.
But if you have lived with aspergillosis, or cared for someone who has, your experience may be more valuable than you think.
In short: this is a voluntary opportunity to help improve understanding, research and care for aspergillosis across Europe, while connecting with a wider patient community and making sure lived experience is heard.
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