The NHS National Aspergillosis Centre (NAC) runs a website for patients and carers that contains all the information that they think you and your family will need. www.aspergillosis.org. There is also a hospital-based website section that may be helpful to NAC patients that provides details of the NAC service & Wythenshawe Hospital (ie. Wythenshawe Hospital is part of the Machester University NHS Foundation Trust (MFT) which is the largest NHS Trust in the UK).
All NAC patients have access to the MFT Patient Portal and its smartphone APP myMFT. Once registered to use this new technology patients can see lots of useful information about their clinic visits, clinic letters, their medication list and even the opportunity to find appointment cancellations. More facilities are steadily being added and most patients find this very useful,
The patient’s charity the Aspergillosis Trust (AT) advocates and fundraises for aspergillosis patients and carers everywhere www.aspergillosistrust.org
The Fungal Infection Trust (FIT) has done more to support fungal disease research & support than any other charity, including supporting this website.
Many people find that having a rare disease such as aspergillosis is very isolating and can promote emotional illness too, so it is well worth knowing that there are thousands of people just like you in active Facebook support groups run by NAC and AT. Joining one or two of those groups has been of great benefit to many patients. You can also ask any questions that you may have.
Aspergillosis Support from NAC www.facebook.com/groups/aspergillussupport
Aspergillosis Support from AT
https://www.facebook.com/groups/777282226382870
NAC run twice weekly live chat sessions using Teams software (https://www.microsoft.com/en-gb/microsoft-teams/ – free of charge for Microsoft home plan/Smartphone App) on Tuesday 2pm and Thursday 10am. https://aspergillosis.org/support-meetings/
NAC also run a monthly Teams live chat meeting in the first Friday of each month at 1pm. This has a different purpose, covering requested subjects and more general health guidance with talks from members of NAC staff. https://aspergillosis.org/support-meetings/
If Facebook is not something you want to join, there is a private, secure alternative manned by NAC: https://aspergillosis.org/support-meetings/
For details on joining all of the above groups see NAC website on https://aspergillosis.org/support-meetings/