Due to the fact that we deliberately isolate CF patients from eachother, many CF parents feel disconnected from others who share their experience.
Our combined parent group works across Sydney Children’s Hospital in Randwick and also Westmead Children’s Hospital in Westmead. Everyone is welcome and we meet every month or two. Details for the next meeting are always posted on the homepage here. This parent group is working to increase the health literacy of all CF parents and aims to partner with the CF care teams in each hospital to improve clinical outcomes through better patient / parent education and support.
There are also a number of support groups on Facebook and through CF NSW.
If you’re new to the CF community or grappling with a recent diagnosis, our first diagnosis mentor support network might be of interest.