Rare Disease Day 2019

Rare Disease Day falls on the last day of February every year. 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 problems include delays in 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!

The Aspergillosis Trust is taking part in Rare Disease Day on social media. You can read other patients’ rare disease stories and share your own here to take part in Rare Disease Day. You can also read other aspergillosis patients’ stories on the Aspergillosis Trust website.

The Aspergillosis Trust have also added their logo (along with 90+ other patient organisations) to the open letter to the government asking for a review of the UK Rare Disease Strategy before 2020. You can read this letter here.

Patient stories from World Aspergillosis Day

On World Aspergillosis Day (February 1st), the Aspergillosis Trust organised a whole host of activities and awareness campaigns, to mark the occasion. Alongside their very successful Selfie Campaign, and the poster that was displayed on London buses in the run up to the day, the Aspergillosis Trust collected some poignant stories from patients and carers. Click here to read these stories and find out more about what the Aspergillosis Trust does.

WHO WANTS TO LIVE FOREVER? by Elizabeth Hutton

Good old Freddie Mercury classic – ‘hitting the nail on the head’ brilliantly!  The one sure thing in life is that we’re all going to die – we’re all headed in the same direction – and yet it’s a subject most of us prefer not to think about or discuss.  Having faced imminent death ‘head on’ already anyway, I don’t have a problem with this at all – in fact, I’m probably better prepared due to my experience.  Nor do many other people, judging by the many advertisements for pre-paid funeral plans – it seems that many of us are now less ‘squeamish’ and being more practical.  Surely, it must be quite re-assuring to know that everything is in place and there is little for others to worry about, particularly financially.

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EVERY BREATH YOU TAKE … (Apologies to ‘The Police’ and ‘Sting’) by

Ok – so, this is my first attempt at blogging!  It will probably be best to report on my own experiences and progress with ABPA, and also to bring in accounts/ views of other sufferers of this condition and other types of Aspergillosis.  The latter two will be sourced from the Aspergillosis Support Group for patients and carers – nacpatients.org.uk

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