Why Join the Aspergillosis Patient Advisory Group (PAG)?

Supported by the European Lung Foundation (ELF), NAC CARES, and the European Respiratory Society (ERS).

Living with aspergillosis — CPA, ABPA, SAFS, Aspergillus bronchitis or sinus disease — can be overwhelming. Many people feel isolated, struggle to find clear information, or feel unsure how to influence the care they receive.
That is exactly why the Aspergillosis Patient Advisory Group (PAG) exists.

The PAG is supported by the European Lung Foundation (ELF) — based in Sheffield — and by NAC CARES, the patient engagement and support team at the UK National Aspergillosis Centre (NAC) in Manchester. Together, ELF, NAC CARES and the PAG work closely with the European Respiratory Society (ERS) to make sure the patient voice shapes research, education, and clinical practice across Europe and the UK.

What ELF Does

ELF brings together patients, carers, researchers and professionals from across Europe including the UK. It:

• Provides clear, trustworthy patient information

• Organises and hosts patient advisory groups

• Ensures patient voices are included in ERS guidelines and research

• Supports patient–professional workshops, surveys and consultations

• Helps patients shape respiratory policy and awareness campaigns

Because ELF is UK-based, participation is easy for UK patients.

What NAC CARES Does

NAC CARES is the patient-facing team at the National Aspergillosis Centre in Manchester.
They:

• Support UK patients to join the PAG

• Help connect lived experience from UK clinics to the wider European PAG

• Share updates, resources, and educational material

• Bring PAG priorities back into NAC’s clinical and research work

• Ensure UK patients feel included, represented and supported within ELF and ERS structures

NAC CARES acts as a bridge between UK clinical expertise and European patient involvement.

What the Aspergillosis PAG Does

The PAG ensures that people living with aspergillosis have a direct say in:

• Research design

• European Respiratory Society guidelines

• New diagnostic and treatment pathways

• Patient-friendly information materials

• Awareness projects and health campaigns

• Surveys that drive change in policy and clinical practice

Your lived experience is treated as meaningful expertise.

Why Join the PAG? Why Spend Your Energy?

Many people with aspergillosis have limited energy.
Here is why members say it is worth it:

1. You receive clear, reliable information

Updates on research, antifungals, biologics, trials and guidelines — written for patients, not scientists.

2. Your voice shapes real decisions

ERS guideline committees and research teams listen.
Your input changes how care is delivered.

3. You feel less alone

Aspergillosis is rare.
The PAG connects you with people across Europe and the UK who truly understand.

4. You choose how involved you want to be

You can simply receive updates — or you can complete the occasional survey, join a focus group, or help shape a guideline.
No pressure, no obligation.

5. It improves care for everyone — including you

Your experience helps highlight what really matters:

• Delayed diagnosis

• Side-effects

• Treatment access

• Fatigue and breathlessness

• Impact on quality of life

This evidence influences clinicians, researchers and policymakers.

6. It is free, inclusive and easy to join

No travel.
No cost.
All online.
Europe includes the UK, and ELF is based in Sheffield.

Who Can Join?

Anyone affected by aspergillosis:

• Patients with CPA, ABPA, SAFS, Aspergillus bronchitis or sinus disease

• People with fungal allergy in asthma or bronchiectasis

• Family members and carers

No medical background needed.

How to Join

You can join in a few minutes:

👉 https://europeanlung.org/en/patient-advisory-groups/
Choose “Aspergillosis”.

You’ll then receive updates and invitations to take part — always at your own pace.

In One Line:

The PAG gives you good information, a real voice in shaping aspergillosis care, and a supportive community — with full backing from ELF, ERS and NAC CARES.

by GAtherton