Aspergillosis Trust: Supporting People Affected by Aspergillosis

Raising Awareness of Aspergillosis

One of the Trust’s most important roles is increasing awareness of aspergillosis among:

• Patients and carers
• Healthcare professionals
• Researchers
• Policy makers
• The wider public

This includes helping people better understand conditions such as:

• ABPA (Allergic Bronchopulmonary Aspergillosis)
• CPA (Chronic Pulmonary Aspergillosis)
• Aspergilloma
• Invasive aspergillosis
• Severe asthma with fungal sensitisation (SAFS)

By promoting education and awareness, the Trust helps support earlier recognition and diagnosis of fungal disease.

Patient Support and Community

Living with aspergillosis can be physically and emotionally challenging. Many patients experience fatigue, breathlessness, anxiety, long treatment journeys and uncertainty about the future.

The Aspergillosis Trust helps provide:

• Patient-focused information
• Community support
• Awareness campaigns
• Educational events
• Opportunities for patient involvement

The charity also helps patients connect with others who understand the realities of living with chronic fungal disease, reducing feelings of isolation and helping people feel supported.

Supporting Research and Advocacy

The Trust actively supports research into aspergillosis and fungal disease, while also advocating for better services and greater recognition of fungal infections within healthcare systems.

This includes:

• Supporting patient participation in research
• Raising awareness of diagnostic delays
• Promoting better understanding of chronic fungal disease
• Working alongside clinicians, researchers and respiratory organisations
• Supporting international awareness activities

The organisation has collaborated with specialist centres, patient groups and international respiratory organisations to strengthen awareness and improve education around aspergillosis.

Working Together with the Wider Respiratory Community

The Aspergillosis Trust is part of a growing international effort to improve fungal disease awareness and patient support.

This includes collaboration and engagement with organisations such as:

• European Lung Foundation (ELF)
• European Respiratory Society (ERS)
• Specialist respiratory and infectious disease centres
• Patient advocacy organisations
• Researchers working in fungal disease and respiratory medicine

These partnerships help ensure that the experiences of people living with aspergillosis are represented within wider respiratory healthcare discussions.

Differences Between the Aspergillosis Trust and National Aspergillosis Centre Patient Support

The Aspergillosis Trust and the National Aspergillosis Centre (NAC) both play extremely important roles in supporting people affected by aspergillosis, but they are different types of organisations with different responsibilities and strengths. In many ways, they complement one another.

The National Aspergillosis Centre (NAC)

The National Aspergillosis Centre is an NHS Highly Specialised Service based at Wythenshawe Hospital in Manchester. It is a specialist clinical centre commissioned to diagnose, treat and manage complex aspergillosis cases — particularly Chronic Pulmonary Aspergillosis (CPA).

The NAC provides:

• Specialist medical diagnosis and treatment
• Advice and Guidance to clinicians across the UK
• Monitoring of antifungal therapy
• Clinical investigations and testing
• Research programmes
• Patient education resources
• NHS-supported patient support meetings and moderated support groups

The NAC CARES team (Community, Awareness, Research, Education and Support) runs:

• The patient information website aspergillosis.org
• Weekly Microsoft Teams meetings
• Educational webinars
• Facebook and online support communities
• Research participation activities
• World Aspergillosis Day educational events

Because the NAC is part of the NHS, its information tends to be strongly clinically focused and evidence-based, with close involvement from specialist doctors, nurses, pharmacists and researchers.

The Aspergillosis Trust

The Aspergillosis Trust is a patient-led charity rather than a clinical NHS service. It was created by patients and carers affected by aspergillosis to improve awareness, advocacy and community support.

The Trust focuses particularly on:

• Raising public and professional awareness
• Patient advocacy
• Representing the patient voice
• Community support
• Campaigning for earlier diagnosis and better recognition
• Helping reduce isolation among patients and carers

Because it is patient-led, the Trust brings a particularly strong lived-experience perspective. Many people find this valuable because the charity is run by people who directly understand the emotional, practical and social impact of living with aspergillosis.

A Simple Way to Think About the Difference

How They Work Together

Importantly, these organisations are not competitors. They often collaborate closely on awareness campaigns, patient education, World Aspergillosis Day activities, webinars, conferences and research engagement.

Many patients benefit from engaging with both:

• The NAC for specialist medical expertise and educational resources
• The Aspergillosis Trust for advocacy, lived experience and broader patient community support

Together, they help create a stronger support network for people living with aspergillosis.

Why Patient Participation Matters

Patient experience is one of the most valuable resources in improving understanding of aspergillosis.

People living with aspergillosis often understand challenges that are not always visible in clinical appointments, including:

• Diagnostic delays
• Fatigue and fluctuating symptoms
• Treatment side effects
• Emotional impact
• Difficulties accessing information and support

By sharing experiences and becoming involved in awareness and advocacy activities, patients and carers can help improve understanding and support for others.

Participation does not need to be overwhelming. It can include:

• Sharing experiences confidentially
• Joining online discussions or support groups
• Supporting awareness campaigns
• Attending educational events
• Helping improve patient information
• Participating in surveys or research projects

Even small contributions can help improve awareness and care for future patients.

How to Learn More or Get Involved

• Aspergillosis Trust Website
• European Lung Foundation Aspergillosis Pages
• National Aspergillosis Centre Resources

The Aspergillosis Trust demonstrates the importance of patient-led advocacy in rare and under-recognised diseases. Through education, awareness and community support, the charity helps ensure that people living with aspergillosis are better informed, better supported and increasingly heard.