Our Stories
Faber the Dragon goes digital
The story behind the evolution of our educational children’s story. Faber the Dragon is a children’s story about a small child who has a messy dragon living inside of him. Julie Fitzgerald, a fellow Fabry patient, penned the book for her young niece to help explain...
Clinical Trials Presentation 2022
What is Gene Therapy and are you eligible to apply for upcoming clinical trials?Fabry Australia and the Fabry Australia Medical Advisory Committee invited members to join them for an online meeting on 14th September 2022 to discuss upcoming gene therapy clinical trial...
Rescheduled – Fabry Wellness Retreat
Latest News We are very excited to announce the new date for the Fabry Australia Wellness Retreat is Friday 24-March to Sunday 26-March 2023. The event will us to gather for some well-earned relaxation and rest. It will be an opportunity for you to meet others living...
Fabry Australia 2022 AGM
UPDATED 25-August 2022 The Chair Report from the Fabry Australia 2022 AGM can be viewed by clicking here. ORIGINAL POST This notice is to advise you of the upcoming 2022 Annual General Meeting of the members of Fabry Australia. Please note, this meeting is only open...
Preventing the consequences:
An evidence-driven proposal for a change in the treatment paradigm for Fabry disease to ensure timely and equitable access to treatment after confirmatory diagnosis. In Australia access to available treatments is managed via the Life Saving Drug Program (LSDP)...
Caitlin’s Story
Sanofi Genzyme provide a program for health professionals called the ‘Fabry Academy’ and incorporate patient stories. In this video Caitlin Emmerich bravely shares her story.Share your Fabry Story with us via email to admin@fabry.com.au
My Diagnosis Story – Kaye Stephens
Kaye recently shared her story about being diagnosed with Fabry disease. What led to your Fabry disease diagnosis? I had thickening of my heart wall and my medical team wanted to see if it was hereditary, so l went to the genetics clinic for testing. Some blood tests...
Sonya’s Story
My Father was the first in our family to be diagnosis with Fabry disease. He was 21 when I was born, and I believe he had been diagnosed at that stage. My father passed at aged 62 after kidney and heart conditions. During his life he had a kidney transplant, but it...
Interview with Dianne
Tell us about your diagnosis journey. What led to your diagnosis? How did you research or learn about Fabry disease? My sister was diagnosed after years of searching for answers to her symptoms. We felt sure mum would test positive, so she was tested next. However, to...