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Aspergillosis is a group of rare diseases that can isolate patients and carers, as most will never come across another person who also has it. Social support is known to be vitally important to help people live as well as possible with aspergillosis, and we know just having someone to chat to can be of great benefit to wellbeing, emotional health and self-management.
The National Aspergillosis Centre (NAC) provides extensive social support nationwide to help prevent loneliness and provide information to help a better understanding of this often little-known group of infections and respiratory diseases.
Social media support groups
We host several groups on Facebook. Most activity happens in Aspergillosis Support (UK), which is intended for all UK citizens diagnosed with aspergillosis. A member of NAC staff member is on hand most days to moderate and support where needed. Some people also belong to one of our regional groups where they can chat about local issues. The regional groups are:
NAC on Social Media
NAC maintains a Facebook page where you will find our latest news, events and notices and a Twitter account (@MFT_NAC) for regular content about events and research.
Information about Aspergillosis
Aspergillosis comes in several forms, and its diagnosis and treatment are complex. It helps us all if all patients and carers understand their form of aspergillosis and how it is best managed. To make that possible, NAC runs a comprehensive website for patients and carers – to read about all forms of aspergillosis, go to aspergillosis.org
Patient Support Meetings
A new diagnosis of aspergillosis can make you feel scared and isolated. You probably have many questions and little time with your consultant to answer them. As time passes, you might find it comforting to talk to other patients who ‘get it’ rather than just relying on partners, friends and family.
Peer support is invaluable when you are diagnosed with a rare disease like aspergillosis. It can help you realise you are not alone and provides an environment for expressing feelings and concerns. Many patients who attend our support groups have been living with the disease for a long time, and they often share their experiences and personal tips for living with aspergillosis.
That is one reason why every Tuesday at 2pm, Thursday at 10am and on ad-hoc Wednesday evenings (as advertised) (UTC), we run virtual support meetings via Zoom. They are free, and closed-captioned and everyone is welcome. It is a fantastic opportunity to chat with other patients, carers and NAC staff.
You can register to join us via Eventbrite.