Welcome to FAN’s website!

If you’re affected by FA (sufferer, family, carer, friend), then FAN, this site and our group on Facebook are for you. We’re based in Queensland and much of the information here, specifically the stuff about state government assistance is relevant only to QLD. But the information about FA is relevant to everyone and we welcome discussion and input from anyone affected by FA no matter where you live. Everyone’s welcome!

There are many ways you can be part of our network. You can come visit this site whenever you like, and you’ll find whatever we’ve been able to find out so far. Read the blogs and gain insight into the perspectives of those affected by FA. Leave feedback on any of those blogs to let us know if what we write has relevance and is helpful to you. Join FAN and be part of our network. You’ll be invited to meet with others affected by FA and contribute to this network, and receive notification of anything we do or find out. Join our group on Facebook and be alerted whenever we have anything new to share.

If there’s an improvement you’d like to see on this website, something you’d like more information on, please let us know. There’s a contact email address at the bottom of the page. All feedback is welcome!

FAN has a committed management committee, this website and a group on Facebook (click here). We’re a Queensland-based network of FAers, families, carers and friends, so gatherings and get-togethers will be in Queensland. But most of what we do is online so you’re welcome to be part of our network wherever you are in the world. We aim to share learnings about the condition and how each of us can best manage FA and manage our lives around it. Membership is free. If you’d like to know more, just click here.

Raising funds for research to find treatments and a cure for FA is the domain of FARA (fara.org.au). FAN is concerned with how each of us should make the most of our lives in the meantime.

Information that’s permanent and needs to be easily findable will be posted on this website. Stuff that’s more opinion- or discussion-based can be popped onto Facebook. It’s a closed group which means you need to be accepted to join and once joined, it’ll automatically notify you of anything new posted there. If you comment on something that someone posts, it’ll email you any subsequent comments by anyone else related to that post.