Living with aspergillosis can bring questions and challenges that are hard to explain to people who have not experienced them. Our online community gives people affected by aspergillosis a place to share experiences, ask questions and support one another.
Why have we created this community?
People use different ways to keep in touch, and no single platform suits everyone. Some people prefer not to use Facebook, while others find it difficult to keep up with posts in a large social media network. What you see in a Facebook feed is shaped by algorithms, and useful conversations can quickly move out of view.
Our Telegram group is useful for brief, informal conversations. Discourse serves a different purpose: it organises discussions into topics, so conversations are easier to follow and find again. Posts do not simply disappear beneath newer updates after a few days. A question answered today may also help someone who finds it weeks or months later.
The community is private and separate from Facebook and Telegram. You do not need an account on either platform to take part.
Who can apply?
The community is for people with aspergillosis and their family members or carers. When you apply, please tell us which form of aspergillosis you have, or whether you are applying as a family member or carer. We review applications before approving access.
How to become a member
Visit the community and apply to join. Create an account and complete the application questions, including your connection to aspergillosis. An administrator will review your application. If it is approved, you can sign in and join the discussions.
How to use the community
New to Discourse? This short video introduces the platform and shows how to get around. You can then explore the categories and topics, read existing discussions, or start a conversation of your own.
Watch the Discourse help video on YouTube
Categories and topics
Discourse organises the community into categories for different subjects, such as ABPA, CPA, aspergilloma, Aspergillus sinusitis and Aspergillus bronchitis, as well as general support. Within a category, each conversation is a topic with its own title and replies. You can browse topics, read existing conversations, or start a new topic by asking a question or sharing an experience.
You are welcome to look around before joining a conversation.
What can I expect?
Members have different diagnoses, treatments and experiences. Information shared in the community reflects personal experience and is not a substitute for advice from your doctor or specialist team. Please speak to your healthcare team before making changes to your treatment.
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