Rare Disease Day 2020 – 29th February

Rare Disease Day falls on the last day of February each year (with February 29th being a rare date itself!). The day is an opportunity for patients and advocacy groups to campaign and raise awareness about rare diseases, such as aspergillosis. 1 in 20 people will live with a rare disease at some point in their lifetime, yet there are still huge challenges faced by those who do. Common issues include delays to diagnosis and difficulties accessing treatment and care – these problems may sound all too familiar to many aspergillosis patients. Click here to find out more about Rare Disease Day, and how you can get involved!

What is Rare Disease Day?

Successes from Rare Disease Day 2019:



To share your story this year, click here to explore the ‘Rare Reality’ campaign website

9th Advances Against Aspergillosis and Mucormycosis Conference

Between the 27th and 29th February 2020, scientists from around the world will be meeting in Switzerland to discuss the latest developments in aspergillosis and mucormycosis research. At these conferences, participants have the opportunity to view posters and attend talks on the latest research, as well as meeting other experts in the field. The National Aspergillosis Centre team was planning on attending the event, however due to concerns about Corona virus this has not been possible. Instead, Graham has chosen a few posters that he thinks may be interesting to patients and carers, and he has explained these on video. View these videos by clicking on the links below (you must already be, or become a member of the Facebook support group to do so):

Impact statements from people living with aspergillosis have also been displayed at the conference on World Aspergillosis Day, bringing patient voices to a largely academic event:

patient impact statement about aspergillosis

If you would like to know more about the conference, click here. If you would like to read the programme of abstracts yourself, you can find it here.

NAC Comms team becomes NAC CARES team

“So, what do you do?” What a difficult question! The communications team at the National Aspergillosis Centre have been mulling this one over a lot recently and have decided that they need to make things clearer.

They have been known as ‘the comms team’ for a long time. But what does that really mean? How can they explain what they really do? They have broken it down into five main areas and have become NAC CARES.

NAC CARES
NAC CARES: Community Awareness Research Education Support

This is what they want to communicate about the National Aspergillosis Centre.

Community

NAC is at the centre of a community. That community is made up of people with aspergillosis, their families and carers, clinicians, researchers, academics and allied health care professionals. We work with the Aspergillosis Trust, the Mycology Reference Centre Manchester and the Manchester Fungal Infection Group. We’re available to consult with staff from any other hospital if they need specialist advice about aspergillosis. Together we are fighting against aspergillosis.

Awareness

We strive to raise awareness of aspergillosis. We champion World Aspergillosis Day. We provide research and clinical resources for academics and health care professionals. We provide free information to patients.

Research

NAC has an extensive clinical research portfolio including azole resistance, optimising diagnostics, clinical outcomes and quality of life, genetic basis of disease and immunity.

Education

We provide information to patients about aspergillosis. We also provide diagnostic and clinical training to health care professionals and technical staff through a variety of online learning resources.

Support

NAC is a friendly place to visit both on and offline. Our staff are helpful and knowledgeable. As well as clinical care, we support people with aspergillosis and their families by hosting face to face and online support groups.

NAC CARES!

The first letter of each of these areas spells out the word ‘cares’. And that’s exactly what we do. So, your NAC comms team will now be known as your NAC CARES team.

Graham Atherton, NAC CARES team lead, said “This is a real step change for us in terms of communicating our function to the people who use our service.”

What are the risk factors for Chronic Pulmonary Aspergillosis returning once antifungal therapy has been stopped?

Chronic pulmonary aspergillosis (CPA) can be a scary disease. People can be on antifungal drugs for a very long time, sometimes indefinitely. This can be worrying. Is it ever possible to come off antifungal drugs? Will the fungus ever go away? If the drugs are stopped, might the fungus come back again?

A recent research paper from the National Aspergillosis Centre has attempted to find some answers.

The researchers wanted to know how many people with CPA relapsed once their antifungal treatment was stopped. They also wanted to know what the risk factors for relapse might be. Understanding these risk factors might help to manage the disease better and might tell us which patients are at a low risk of relapse. This means that for these patients, treatment could be stopped earlier and so antifungal resistance, toxicity and cost could be reduced.

The scientists looked at people with aspergillosis who were treated at the National Aspergillosis Centre between 2009 and 2017. They identified at 102 people whose antifungal treatment (mainly voriconazole) was stopped during this period.

In 21% of people, CPA came back (21 out of 102 people). The key risk factors for relapse were the involvement of both lungs and, to a lesser extent, the presence of an aspergilloma.

In a different study of patients with CPA who were mainly treated with itraconazole, presence of disease in more than one lobe on CT scan, younger age and longer duration of treatment to achieve remission were associated with a higher risk of relapse.

Even though the authors found that CPA came back for 21% of people in this study, the chance of relapse is a very difficult thing to predict. Many people with CPA have other conditions which affect their health such as bacterial infections, non-tuberculous mycobacterial infections or COPD. Doctors might look at information from scans, microbiology or blood test results to help inform them as to whether relapse is likely, or they might rely on whether a person seems to be ‘getting worse’ clinically.

That said, this study showed that where both lungs are affected and an aspergilloma is present, the likelihood of relapse is increased, although it should be noted that antifungals were stopped mainly because of side effects or resistance development, and not because of achieving remission of disease.

The full paper is available on the Aspergillus Website.

This is a figure from the research paper showing that people with bilateral aspergillosis (i.e. aspergillosis involving both lungs) are more likely to relapse that people with aspergillosis involving one lung (unilateral disease). The green line is for both lungs, the blue line is for one lung.
This is a figure from the research paper showing that people with bilateral aspergillosis (i.e. aspergillosis involving both lungs) are more likely to relapse that people with aspergillosis involving one lung (unilateral disease). The green line is for both lungs, the blue line is for one lung.

Rare disease spotlight: interview with an aspergillosis patient and consultant

In collaboration with Medics 4 Rare Diseases, the Barts and the London Immunology and Infectious Diseases society recently held a talk about aspergillosis. Fran Pearson, a patient diagnosed with the condition, and Dr Darius Armstrong, a consultant in Infectious Diseases and Mycology, were both invited to speak at the event. Watch the full talk below to learn more about both the patient’s experience of diagnosis and the challenges faced by doctors when diagnosing patients with infectious diseases.

https://www.facebook.com/BLIDSoc/videos/613592952798238/
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