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.
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