Support groups

If CFTR modulators aren't an option for you or someone you care about, finding others who ‘just get it’ can make a real difference.

Join our friendly online sessions to connect with others who understand, and to share experiences, and support each other. Sessions are open to anyone over 18, living in the UK, who can’t take, or has a loved one who can’t take, any currently available modulator therapies (Alyftrek, Kaftrio, Orkambi, Symkevi, or Kalydeco).

You're not alone. Join the conversation and be part of a supportive community.

Support group for people with CF – 13 October 7–8pm

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Support group for loved ones of people with CF – 14 October 7–8pm

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Not everyone with CF is diagnosed by the heel prick test. Some people get their diagnosis later in life.

Receiving a late diagnosis can be an emotional rollercoaster for everyone involved, which often involves coming to terms with a complex diagnosis and trying to understand medical terms you might have never heard of before, as well as having to juggle the daily treatments, physio, and regular hospital appointments. This can be overwhelming for the person who has been diagnosed and for their loved ones, and some people have told us they felt alone and isolated in dealing with this. 

Cystic Fibrosis Trust has created a safe space for people impacted by late diagnosis of CF to come together to share their experiences.

The session will be split into two parts. First, you'll hear from people in the CF community who were diagnosed at different stages of life. They'll share what a late diagnosis meant for them and their loved ones. We'll record this part so people who can't attend live can watch it later. Then we'll stop the recording and open up the conversation. This is a safe space where you can share your own experiences if you'd like to.

This session will take place on 29 September at 7pm.

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