Patient Support Meetings

Living with aspergillosis can sometimes feel isolating. Because the condition is relatively uncommon, many people have never met another patient with the same diagnosis. Support meetings give patients and carers an opportunity to share experiences, ask questions and learn from others.

These meetings are friendly, informal and open to anyone affected by aspergillosis, including patients, family members and carers.

Why Support Meetings Can Help

Many patients find that speaking with others who understand their experience can make a significant difference. Support meetings can provide:

  • practical advice from other patients
  • a chance to share experiences and coping strategies
  • opportunities to ask questions
  • updates about research and treatment
  • reassurance that you are not alone

People often say that hearing how others manage fatigue, breathlessness, medication side effects and everyday challenges is one of the most valuable aspects of the meetings.

Who Can Attend?

Support meetings are open to:

  • people diagnosed with aspergillosis
  • people undergoing investigation for possible aspergillosis
  • family members and carers
  • anyone interested in learning more about the condition

You do not need to be a patient at a particular hospital to join.

What Happens During a Meeting?

Each meeting is slightly different, but typically includes:

  • informal discussion between patients
  • opportunities to ask questions
  • updates about new research or treatments
  • short talks or presentations on relevant topics
  • time to share experiences and practical advice

The atmosphere is supportive and respectful. People can participate as much or as little as they wish.

Online Meetings

Most meetings take place online, making it possible for patients from many different countries to take part.

Online meetings allow people who may have limited energy, breathlessness or mobility problems to participate without needing to travel.

You can join from a computer, tablet or smartphone.

How to Join

Information about upcoming meetings, including dates and joining instructions, can be found here:

View upcoming patient meetings →

If you are new to the meetings, you are very welcome. Many people attend simply to listen at first.

What If I Feel Nervous About Joining?

It is completely normal to feel unsure about joining a group for the first time. Many people initially join quietly and listen to the discussion before deciding whether they would like to contribute.

You are always free to participate in whatever way feels comfortable for you.

Support for Carers and Family Members

Carers and family members are also welcome. Living alongside someone with a chronic illness can be challenging, and carers often benefit from sharing experiences with others in a similar situation.

Some discussions focus specifically on the experiences of carers and the ways families adapt to changes in health.

Respectful Community

Support meetings aim to provide a safe and respectful space for everyone involved. Participants are encouraged to listen to others, respect different experiences and avoid giving medical advice that conflicts with professional care.

Clinical questions should always be discussed with your healthcare team.

Common Questions

Do I have to speak during the meeting?

No. Many people join simply to listen and learn from others.

Can I attend if I have just been diagnosed?

Yes. Newly diagnosed patients often find the meetings particularly helpful.

Can carers attend?

Yes. Carers and family members are welcome.

Do I need to register?

Some meetings may ask participants to register in advance. Details are provided on the meetings page.

Where to Go Next

Last reviewed: March 2026