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

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.”

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.

World Aspergillosis Day 2020

World Aspergillosis Day 2020 is almost here! The big day is February 27th and here’s a few ideas of ways that you can support the occasion and help to raise awareness of aspergillosis.

Submit your selfie!

The Aspergillosis Trust are asking people to show their support by downloading a selfie card, taking a selfie with it, and uploading it to their ‘Selfie Hall of Fame‘. Please get involved and show your support!

Add a WAD2020 graphic to your email signature.

We have produced a signature graphic for you to use on emails. Feel free to save your favourite colour version and share it far and wide!

Show your support for WAD2020 on your social media profile pictures.

You can support the campaign to raise awareness of aspergillosis by adding our twibbon to your profile picture. Twibbon will create a new profile picture for you containing the WAD2020 logo. Download this image and upload it to Twitter. Voila!

For Facebook it’s much simpler! Just add our frame!

Show your support for WAD2020 on your social media profile pictures.

You can support the campaign to raise awareness of aspergillosis by adding our twibbon to your Twitter profile picture. Simply visit https://twibbon.com/support/world-aspergillosis-day-2020 and add the twibbon to your profile picture in. Twibbon will then create a new profile picture for you containing the WAD2020 logo. Download this image and upload it to Twitter. Voila!

For Facebook it’s much simpler! Just add our frame!

Use our social media header images for LinkedIn, Twitter and Facebook.

Please take a look and download and choose your favourite colours.

Display our poster in your office or in a window at home

Print out and display our WAD2020 poster.

Host a coffee morning to raise awareness

On February 27th at 10am The National Aspergillosis Centre will be hosting a virtual coffee morning whilst at AAAM2020. We’ll be talking online to patients, researchers and clinicians. We invite you to run your own events at home and at work. So why not gather your friends, family or colleagues, make a brew, enjoy a slice of cake and tweet about taking a moment out of your day to raise awareness using the hashtag #worldaspergillosisday2020

Here’s a few assets to download to decorate your home or office. There’s bunting, cake labels and invitations!

WAD2020 Coffee Morning Assets

Wuhan Novel Coronavirus (COVID-19) Latest Information and Advice

Latest updates on COVID-19 outbreak

February 14th 2020: Latest UK government advice

Aspergillosis patients are warned by their doctors to take precautions to avoid respiratory viral infections (e.g. have the annual ‘flu vaccine) so this article is intended to help you understand the level of risk we are currently experiencing in the UK and perhaps generally outside of China. If this changes we will update the message above.

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