I have or care for
someone with Fabry
Thanks for visiting the Fabry Australia website.
We’re so glad you’ve found us, we provide support to people with Fabry disease to help them have a better ‘lived’ experience.
Below are some links that might assist you to find the answers you require.
Monitor disease progression
As part of your ongoing care you may be asked to undergo a series of tests every year to monitor disease progression. If you’re finding it overwhelming to organise these yourself, you’ll be pleased to know there is someone who can assist with this. AtYOURside provide this service free of charge to Fabry patients, please contact Clinical Nurse Co-ordinator, Beth Montano HERE to find out how she is able to assist.
On the treatment tab you’ll find information about therapies that are currently available and also emerging therapies currently being researched and tested. Sometimes there are opportunities to participate in clinical trials and we update this tab and also include details in our quarterly eNews. You’ll also find contact details for the adult and paediatric Fabry clinics in your state if you don’t already have these.
Genetic counselling can be sought pre-conception to discuss the X-linked genetic inheritance of Fabry disease. Many reproductive options are available to patients with Fabry disease and may include pre-implantation genetic diagnosis to select unaffected embryos.
A list of the State-based genetic counselling services is available HERE.
Connect with us
We’d love you to become a member of Fabry Australia, it’s FREE and will provide a number of opportunities and benefits. We’ll keep you informed via our quarterly eNews of upcoming conferences and events, clinical trial opportunities, emerging treatments, fundraising initiatives and more. You’ll also benefit from being part of our group advocacy efforts for better patient care in Australia, because together we have a stronger voice.
Speak with a volunteer
Sometimes it helps to speak with someone who understands what it’s like to live with Fabry disease. Please contact us and tell us a little about you and your concerns and we’ll get a member of our committee to contact you and set up a time to chat via phone.
Just be aware we don’t have set office hours as our committee are all volunteers who either have Fabry or a family member has Fabry.
A final word
We hope this has helped to answer many of your initial questions. Please take the time to look around this website and be sure to check out some of our stories. We want you to know that you are not alone, feel free to reach out at any time.
Fabry Australia ‘Understanding Fabry Disease’ Factsheet
Understanding Fabry Disease booklet was produced by Fabry Australia and reviewed by Fabry Australia’s Medical Advisory Committee. It is an excellent resource for explaining Fabry disease to a new diagnosed patient and their family and or friends. It is a helpful resource to show health professionals unfamiliar with Fabry Disease.