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:

What aspergillosis is and the different forms it can take
Symptoms and diagnostic challenges, including delays in recognition
Current treatment and management approaches
Living with aspergillosis, shared directly by patients
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:

People with lived experience of chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA)
Representatives from NAC, The Aspergillosis Trust and the ELF Aspergillosis Patient Advisory Group
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:

People living with aspergillosis and related lung conditions
Family members, carers and supporters
Healthcare professionals seeking a patient-focused overview
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:

The importance of patient voices in education and guideline development
The need for earlier diagnosis and clearer care pathways
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.

by GAtherton

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

NAC CARES Virtual Challenge - We've Made It From Lands End to John O'Groats!

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We're pleased to announce that the NAC CARES Team has successfully completed our virtual journey from Lands End to John O'Groats. Over the past few months, our team has walked, cycled, and run an incredible total of 1744km (1083.9 miles)! Starting on February 1st, World Aspergillosis Day, we set ourselves 100 days to complete the challenge, but, we completed it ahead of schedule, on May 12th, 5 days sooner than anticipated.

Our virtual expedition has been a grand tour of the UK, from the stunning cliffs of Lands End in Cornwall to the rugged shoreline of John O'Groats in Scotland. We virtually journeyed through England's diverse landscape, passing through picturesque countryside, vibrant cities, and historic towns. From the iconic signpost at Lands End to the bustling streets of Bradford, the rich cultural heritage of Huddersfield, the dramatic landscapes of the Peak District National Park, the green spaces and cultural landmarks of Sheffield, and the legendary Sherwood Forest - each place a unique story in our broader narrative.

Crossing the border into Scotland, we continued our journey through the Scottish Highlands, with its breathtaking panoramas and rich history. We passed through the charming village of Fort Augustus, navigated around the famous Loch Ness, and made our way through the Cairngorms National Park, known for its diverse ecosystems, unique flora, and rare wildlife.

Our journey culminated at John O'Groats, traditionally acknowledged as the extreme northern point of mainland Britain, marking a triumphant conclusion to our endeavour.

But the importance of this journey extends far beyond the physical accomplishment. This effort was a symbol of unity, resilience, and determination, resonating with the values we uphold in our battle against fungal infections. We embarked on this challenge to raise much-needed funds and awareness for the Fungal Infection Trust, an organisation dedicated to advancing research, promoting awareness, and improving treatments for individuals affected by fungal infections.

We want to express our gratitude for all the support we have had throughout this journey. However, the fight against fungal infections doesn't stop here.

If you have not yet made a contribution or if you feel moved to give more, please do so via our fundraising page:

https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

Thank you for your part in this journey and for standing alongside us in this vital cause. We celebrate the difference we've made together and anticipate the positive impacts we will continue to make in the future!

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by Lauren Amphlett

NAC CARES Virtual Challenge - 803 miles (1292.41 km) down

It's been a couple of weeks since our last update, and we're excited to share our progress on our team's virtual Lands End to John O'Groats challenge. As most of you may know, we embarked on this journey to walk, cycle, and run the length of the UK to raise money for the Fungal Infection Trust. Despite the Easter holidays, we haven't stopped and are mostly being fueled by Easter eggs right now!

We have now covered a total of 1292.41km (802.6 miles), which is 74% of the distance, in only 67% of the planned time of 100 days. This puts us well ahead of schedule, with just 451.79km (280.6 miles) remaining in our challenge.

Currently, we are in Scotland and approaching the iconic Forth Bridge. Along the way, we have passed several historic landmarks, including:

Hadrian's Wall: A UNESCO World Heritage Site, this ancient Roman fortification stretches for 73 miles (117 km) across the North of England from the west coast of Cumbria near the Solway Firth to the east coast near the River Tyne in Tyne and Wear. Constructed in AD 122 under Emperor Hadrian's rule, the wall was designed to separate Roman Britain from the barbarian north and served as a military defence line.

Edinburgh Castle: Perched on an extinct volcano, this historic fortress dominates the skyline of Scotland's capital city. With its origins dating back to the 12th century, the castle has been a royal residence, a military garrison, and a prison over the years. Today, it serves as a popular tourist attraction and houses the Scottish Crown Jewels and the Stone of Destiny, also known as the Stone of Scone or the Coronation Stone, which is a historic and symbolic block of red sandstone, measuring approximately 26 inches (66 cm) in length, 16 inches (40 cm) in width, and 11 inches (28 cm) in depth.

Our accelerated pace is down to our team's hard work and dedication. We are making excellent progress in our challenge, but we still have a significant distance to cover to reach John O'Groats and our fundraising goal. We are grateful for your support and are confident that, together, we will make a difference in the fight against fungal infections.

Thank you for following us on this journey; we look forward to sharing more updates with you soon. You can donate via the link below.

https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

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by Lauren Amphlett

2023 Bronchiectasis Patient Conference

The 2023 Bronchiectasis Patient Conference, organised by the European Lung Foundation, is a popular event for patients each year. This year we asked two of our patients who attended to share their personal experiences and thoughts on the conference, highlighting its importance and impact.

Our patients reported that the conference attracted 1,750 registrations from 90 countries, and during an online questionnaire, 47% of participants identified as living with bronchiectasis. Dr Fiona Mosgrove's presentation on "Living with Bronchiectasis" provided valuable insights on lifestyle, nutrition, and mental health, recommending two books for further reading.

Prof. James Chalmers discussed a potential new treatment involving an anti-pseudomonas monoclonal antibody, demonstrated through engaging video clips. The conference also covered other topics such as Phage therapy, bronchiectasis through different life stages, and the importance of end-of-life care discussions.

Both patients found the conference to be an informative and valuable experience, despite facing some technical difficulties and unclear presentations due to those difficulties. They appreciated Dr Chalmers' well-paced talk on new treatments, as well as Dr Mosgrove's discussion on mental health and airway clearance techniques. One patient noted that while coexisting diseases like chronic obstructive pulmonary disease (COPD) and asthma were mentioned, there was no reference to Aspergillosis. The conference emphasised the importance of daily airway clearance, exercise, relaxation, and ongoing research for more effective treatments.

In summary, both patients found the 2023 Bronchiectasis Patient Conference to be an enriching experience, providing valuable insights and practical takeaways for managing the condition. Despite some technical issues, the conference succeeded in raising awareness and fostering a sense of community among people living with bronchiectasis.

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by Lauren Amphlett

NAC CARES Virtual Challenge – 587.5 miles (945.11 km down)

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We are excited to share with you an update on our team's virtual Lands End to John O'Groats challenge. As you may know, our team is walking, cycling, and running the length of the UK to raise money for the Fungal Infection Trust. We are proud to announce that we have completed 54% of the challenge, which is equivalent to 945.11km or 587.5 miles.

Currently, we are virtually passing through the breathtaking Yorkshire Dales National Park, having already passed through several noteworthy locations on our journey. These include:

Bradford: A vibrant city located in West Yorkshire, known for its industrial history and impressive Victorian architecture.

Huddersfield: A bustling town with a rich cultural heritage, including notable landmarks such as Castle Hill and St. George's Square.

The Peak District National Park: A stunning area of natural beauty spanning across several counties, including Derbyshire, Cheshire, and Staffordshire. It's famous for its dramatic landscapes, rugged moorlands, and picturesque villages.

Sheffield: A vibrant city known for its steel industry, green spaces, and cultural landmarks such as the Millennium Gallery and Winter Garden.

Sherwood Forest: A legendary location associated with Robin Hood and his band of merry men, known for its ancient oaks and rich wildlife.

Rufford Abbey: A former Cistercian monastery located in Sherwood Forest, which is now a popular tourist attraction featuring a country park and gardens.

Sherwood Pines Forest Park: A sprawling woodland park with a range of outdoor activities, including cycling, walking, and a Go Ape treetop adventure course.

Robin Hood's Wheelgate Park: A family-friendly theme park featuring a range of rides, attractions, and live shows.

Nottingham: A historic city with a rich cultural heritage, including landmarks such as Nottingham Castle, the Old Market Square, and the Lace Market.

We are thrilled to have made it this far, and we are well ahead of schedule. We are grateful for your continued support, but we still have a long way to go to reach our fundraising goal and John O' Groats; we are confident both will be achieved, and with it, we will make a difference in the fight against fungal infections.

Thank you for joining us on this journey, and we look forward to sharing more updates with you soon. You can donate via the link below.

https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

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by Lauren Amphlett

NAC CARES Virtual Challenge - 418.5 miles (673.54km down)

The NAC CARES Team are 30 days into their 100-day challenge to travel the length of the UK from Land End to John O' Groats (LEJOG). The last 30 days have seen the team run, cycle and walk to rack up the miles for the 1,084 mile (1,743km) challenge.

The team is outside Coventry and virtually passed through many well-known landmarks, including Stratford-Upon-Avon, The Royal Shakespeare Company Theatre, Oxford and Kenilworth Castle. The beauty of a virtual challenge is that even with the impending cold weather forecast, the team can still check off the miles on treadmills and indoor bikes so, in the words of a Disney Princess, let it snow!

The work of the Fungal Infection Trust (FIT) improves awareness, treatment and outcomes for all those affected by fungal disease. FIT is a small charity who have, over the years, supported the work of the NAC CARES Team, allowing them to maintain their unique work. Every pound raised will help the Trust continue to help people around the world. You can read more about their work here.

To donate, visit here.

by Lauren Amphlett

NAC CARES Virtual Challenge - Week 2

The NAC CARES Team are seventeen days into their virtual Lands End To John O'Groats (LEJOG) challenge, and this last week has seen them cover a further 65.86 miles (106.1km). This means the team have covered a total of 227.29 miles (365.80km), equating to 1/5 of the total distance.

This week's miles were dedicated to aspergillosis patient Ian Stratton, an avid runner with Brackla Harriers who recently passed away.

This week's collective effort has again been achieved with team walks, trail, road and treadmill running, and more long hours on static bikes. This week's virtual landmark was the stunning Durdle Door, a natural limestone arch on the Jurassic Coast near Lulworth in Dorset, England.

The virtual challenge, which the team began on World Aspergillosis Day 2023 (February 1st), covers the length of the UK and will see the team run, cycle and walk a total of 1,084 miles (1,743km).

The goal is to complete the distance in 100 days and to raise just £1 for every km travelled.

If you would like to read more about the Fungal Infection Trust (FIT), which the team are fundraising for, and donate, then follow the link https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

by Lauren Amphlett

NAC CARES Virtual Challenge - Week 1

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It has been ten days since the NAC CARES Team embarked on their virtual Lands End To John O'Groats (LEJOG) challenge. The virtual challenge, which the team began on World Aspergillosis Day 2023 (February 1st), covers the length of the UK and will see the team run, cycle and walk a total of 1,084 miles (1,743km).

The goal is to complete the distance in 100 days and to raise just £1 for every km travelled.

The first ten days have already seen the team cover 14% of the distance; that is 161.4 miles (259.70km), and they are ahead of schedule by a whopping 68.48 miles (110.2km)! The collective effort has been achieved with walks, running, and long hours on static bikes and treadmills. Check out some of the areas we have passed below, and let us know if you live nearby!

The team will be dedicating the next week of miles and km to aspergillosis patient Ian Stratton, an avid runner with Brackla Harriers who recently passed away.

If you would like to read more about the Fungal Infection Trust (FIT) which the team are fundraising for, and donate, then follow the link https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

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by Lauren Amphlett

NAC CARES team charity run for the Fungal Infection Trust

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The Fungal Infection Trust (FIT) provides vital support for the work of the CARES team, without which it would be much more difficult to maintain their unique work.

This year, starting on World Aspergillosis Day 2023 (1st Feb) the CARES team is paying back some of that support to FIT.

The Team (Graham/Lauren/Chris/Beth and Seren) have taken on the challenge of getting from one end of the UK to the other with only the power of our legs in 98 days. There are five in the team: two runners, a cyclist and two walkers. We would all normally cover a few km a day so together we think we can cover the 18km A DAY needed to complete this challenge without too many blisters!

With your help we would like to raise £1 a km for the whole journey, so when we are passing your part of the UK (virtually, as we can't get 98 days off work!) please donate.

Keep an eye out for updates on our blog.

Thank You and wish us well!

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by Seren Evans