Patient and Carer support meeting

The NAC patient and carer support meeting is held on the first Friday of every month. The meeting is an opportunity to meet other aspergillosis patients and carers and listen to talks on a wide variety of different subjects. We usually have one main speaker, followed by updates on research and other news from the NAC communications team. There will also be refreshment breaks, so there is ample time to speak to other patients and carers, or staff. The main talk varies widely and can be anything from lifestyle and coping skills (eg. managing stress) to aspergillosis research updates. We will advertise the talks here a week ahead – if you’re more interested in some subjects than others you are more than welcome to just pop in for one talk! To watch previous meetings click here.

Where?  Altounyan Suite, Wythenshawe Hospital

When? Friday 7th February, from 13:00-15:00 (refreshments from 12:30)

Who? NAC patients can attend in person, and anyone can watch and comment online

How? Follow signs from the Friday clinic through to the Altounyan Suite, or join the Facebook group to watch online

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.

Pulmonary Rehabilitation – is it worth it?

In last month’s patient meetings here at Wythenshawe Hospital, the topic of pulmonary rehabilitation (PR) came up. Some people said it had been useful, some people felt pushed into it, some people felt it was too much and actually made them feel worse instead of better.

This gave us food for thought and we went away to look at the literature. Has anyone studied the outcomes of PR from the patients’ perspective?

The answer was yes! In October last year a paper was published on exactly that, a survey of 1685 people with self-reported chronic lung disease in 29 countries.

» Read more
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