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
| NAC Patient Support | Aspergillosis Trust |
|---|---|
| NHS specialist clinical service | Independent patient charity |
| Led by healthcare professionals and NHS staff | Led by patients and carers |
| Focus on diagnosis, treatment, education and research | Focus on advocacy, awareness and peer support |
| Provides specialist clinical expertise | Provides lived-experience support |
| Closely linked to NHS care pathways | Represents the broader patient community |
| Produces medically reviewed educational resources | Amplifies the patient voice and patient needs |
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.
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.
Aspergillosis Trust – A Community for Patients
The Aspergillosis Trust is a patient-led charity dedicated to helping people affected by aspergillosis and supporting the wider community of patients, carers, families, and friends. It exists to make life with aspergillosis easier by *raising awareness, sharing information, and bringing people together so no one has to go through this alone. *Aspergillosis Trust Charity
Although aspergillosis is a rare condition, the Trust’s vision is simple and powerful: to make aspergillosis widely recognised so it can be diagnosed earlier, treated more effectively, and better understood — by health professionals and the general public alike.
Why the Trust Matters to You
Shared Experience and Support
The Aspergillosis Trust understands what it’s like to live with a rare lung condition because it’s run by patients and carers themselves. This means the insights and support it offers come from real experience, not just medical textbooks. It connects people who have walked similar paths, helping reduce isolation and fostering practical encouragement.
Information You Can Use
The Trust supports people around the world by providing information, resources, and real and virtual support networks. Whether you’re newly diagnosed or navigating long-term treatment, the Trust’s curated links, articles, and connections can help you find reliable answers and understand your options.Charity Commission
Raising Awareness and Understanding
By amplifying patient voices and sharing stories, the Trust helps increase understanding of aspergillosis among doctors, nurses, and healthcare teams. This awareness work helps ensure more people are referred for specialist care sooner, leading to better outcomes.
Where Community Meets Practical Help
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The Trust offers a network of support and encouragement for people living with aspergillosis.
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It provides curated links and resources to help you find information relevant to your situation.
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Through awareness campaigns and shared patient stories, it works to improve understanding and recognition of aspergillosis among clinicians and the public.
Whether you’re looking for knowledge, community, or reassurance that others understand what you’re going through, the Aspergillosis Trust is a valuable companion on your journey.
For more about how to connect or get support, you can visit their website or reach out directly via their contact page.
📚 New Children’s Book Helps Families Understand Aspergillosis
Launch Event at Affinity Outlet, Fleetwood – 13th September 2025
The Aspergillosis Trust is delighted to announce the launch of a brand-new children’s book, Dad and the Sneaky Spores, written by award-winning author Christina Gabbitas and beautifully illustrated by Ursula Hurst.
This story has been specially commissioned to raise awareness of aspergillosis, a serious lung condition caused by the Aspergillus fungus. Through gentle storytelling and colourful illustrations, the book helps children and families understand what it means to live with a parent affected by aspergillosis.
✨ About the Event
📅 Date: Saturday 13th September 2025
📍 Location: Affinity Outlet, Fleetwood
The launch event will be a fun and informative day for all the family.
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✍️ Meet the Author: Christina Gabbitas will be signing copies of the book between 12pm and 2pm.
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👩⚕️ Ask the Experts: A qualified nurse will be available to answer medical questions or offer advice.
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📚 Learn Together: Families can explore how storytelling can make complex health conditions easier to understand.
📖 About Dad and the Sneaky Spores
The book follows a family’s journey with aspergillosis in a way that children can relate to. It not only explains the illness but also encourages empathy, resilience, and understanding within families.
“The narrative not only educates readers about aspergillosis but is also thoughtfully crafted to foster empathy and understanding.” – Aspergillosis Trust
Published by Poems & Pictures, Dad and the Sneaky Spores is available from 1st August 2025.
💜 Why This Matters
Aspergillosis is a rare and often misunderstood condition. By raising awareness through creative storytelling, this initiative provides a new way to start important conversations with children, families, and the wider community.
🔗 Find out more at: www.aspergillosistrust.org