When you live with an isolating condition such as cystic fibrosis (CF), the support you receive online can be a lifeline. Don’t believe me? Journalist Sharon Brennan, who also has CF, recently opened up about her experiences in The Guardian.
Since the Trust set up its first forum way back in 2003 - things have moved on ever so slightly since then, I’ll think you agree! Following a review of our online support last year, it was clear that we needed to improve that support and provide a different and more engaging and inclusive space for our community members, old and new.
Today we are launching our brand new forum. We asked people who used the forum what they did and didn’t like. We asked people who didn’t use the forum why that was and how we might change that. And we sought help from those who use and run similar forums for other health conditions and their communities.
One big difference is in the layout, with the forum divided into a wide range of topics, rather than based on your relationship with cystic fibrosis. We hope it will be easier to find the discussions you are interested in, while avoiding those you would rather not be part of.
We have a closed section for young people, for anything they might want to discuss more privately, without older more boring people (such as mum or dad) listening in. Parents don’t need to worry though, we’ll be there to ensure everyone is looked after!
The new search function is much better so you can find what you need without wading through every post.
We’ve also recruited Community Champions, some well-known and respected members of the old forum, to help myself and the team make the forum a better place for everyone. We hope that the Community Champions can help lead the community from the front, answering unanswered questions or posts, welcoming new members and helping them find their way around and helping the community be a lively, respectful, and enjoyable place.
I’m sure we’ll all get to know each other quickly, but while you are finding your way around you’ll be able to spot us via the medals next to our user names: gold for our community champions and silver for members of staff here at the Trust.
A community can only be as good as we - the members - make it, but I believe in us (and unicorns!). It won’t be perfect straight away, so have a look around, see what you think and let us know. This is our space, so we need to claim it. Some of us have already started the conversation, see you there.
If you have any further questions you can sign in and check out the FAQs or ask someone in the forum - or get in touch by email.