European Lung Foundation (ELF): Giving Patients a Voice in Respiratory Health
What makes ELF particularly valuable is that it is genuinely patient-led. Patients and carers are not simply consulted occasionally; they actively help shape educational resources, awareness campaigns, research priorities and clinical guideline discussions.
ELF and Aspergillosis
One particularly important area of ELF’s work is its commitment to supporting people affected by aspergillosis and other fungal lung diseases.
The ELF Aspergillosis Information Hub provides accessible, reliable information about:
- ABPA (Allergic Bronchopulmonary Aspergillosis)
- CPA (Chronic Pulmonary Aspergillosis)
- Aspergilloma
- Invasive aspergillosis
- Symptoms and diagnosis
- Treatment approaches
- Living with long-term fungal disease
- Patient experiences and support
The ELF Aspergillosis Patient Advisory Group
ELF has also established a dedicated Aspergillosis Patient Advisory Group, bringing together people from across Europe with direct lived experience of aspergillosis.
The group works alongside clinicians and researchers to improve awareness, encourage earlier diagnosis, develop patient education, influence research priorities and support better long-term care.
Why Patient Participation Matters
Aspergillosis is still under-recognised in many countries, and many patients experience long delays before receiving a diagnosis. Patient involvement can help change this.
By sharing experiences, joining discussions and supporting awareness activities, patients and carers can help improve understanding of fungal lung disease, strengthen educational materials, support newly diagnosed patients and raise awareness among healthcare professionals and the public.
Not everyone needs to become a public speaker or campaigner. Participation can include joining online meetings, completing surveys, sharing experiences confidentially, reviewing patient information, supporting awareness campaigns online or helping identify what matters most to patients.
Ways to Get Involved
- Visit the ELF Aspergillosis Information Hub
- Learn about the ELF Aspergillosis Patient Advisory Group
- Explore the ELF Patient Organisation Network
- Support the Healthy Lungs for Life campaign
- Watch ELF videos on YouTube
A Shared Effort
ELF demonstrates that respiratory healthcare works best when patients, carers, clinicians and researchers work together as partners.
For people affected by aspergillosis, involvement in organisations like ELF can help transform personal experience into something that improves understanding, care and support for others across Europe and beyond.
Every patient story, question, survey response and conversation contributes to building greater awareness of aspergillosis and improving the future of care.
Aspergillosis Patient Conference 2025 – summary and recording
The Aspergillosis Patient Conference 2025 took place online on 29 November 2025. The event was co-organised and co-presented by the National Aspergillosis Centre (NAC) and The Aspergillosis Trust, in collaboration with the European Lung Foundation (ELF).
The free conference brought together people living with aspergillosis, carers, patient advocates, clinicians and researchers from across Europe and beyond. Its focus was firmly patient-centred, combining clinical expertise with lived experience to improve understanding, awareness and care.
🎥 The full conference recording is now available to watch online, enabling anyone who missed the live event to benefit from the sessions and discussions.
What the conference covered
Across the programme, speakers explored:
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What aspergillosis is and the different forms it can take
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Symptoms and diagnostic challenges, including delays in recognition
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Current treatment and management approaches
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Living with aspergillosis, shared directly by patients
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What needs to improve, including awareness, education and access to specialist care
Live questions, polling and discussion ensured that patient priorities and real-world concerns shaped the conversation throughout.
Speakers and perspectives
The conference featured a broad range of patient advocates and clinical experts, including:
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People with lived experience of chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA)
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Representatives from NAC, The Aspergillosis Trust and the ELF Aspergillosis Patient Advisory Group
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Respiratory physicians, infectious disease specialists and researchers involved in European clinical guidelines and research
This mix ensured that sessions reflected both medical best practice and day-to-day patient realities.
Who the recording is useful for
The on-demand recording is particularly valuable for:
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People living with aspergillosis and related lung conditions
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Family members, carers and supporters
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Healthcare professionals seeking a patient-focused overview
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Patient organisations and advocates working in respiratory or fungal disease
Why this conference matters
Aspergillosis remains under-diagnosed and poorly understood, despite its significant impact on health and quality of life. This conference highlighted:
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The importance of patient voices in education and guideline development
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The need for earlier diagnosis and clearer care pathways
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The value of collaboration between specialist centres, patient charities and European organisations
By making the recording freely available, NAC, The Aspergillosis Trust and ELF have ensured the conference continues to support patients, carers and professionals well beyond the live event.