Fabry Australia's History
How it all Began!
In 1994 a man (David Davie), was diagnosed with Fabry Disease at the age of 48. After researching and finding very little information about such a rare fatal condition, his wife, Margaret, wrote to the Australian Women’s weekly with an article featuring her husband and his new predicament. See Media for a copy of this published article. As a result many other people who had been diagnosed with this fate came in contact with them and the group was formed. The first FA meeting was held on 4th June 1994 at the Murdoch Institute, Royal Children’s Hospital, Victoria with over 55 people in attendance. It was an outstanding success and the consensus of the meeting was that a Fabry Support Group be formed. Fabry Support Group was officially incorporated from 20th June 1994. It was at this time that the Royal Melbourne Hospital Nephrology Department agreed to form a central Fabry Clinic at the Royal Melbourne hospital and to do some Genetic Research at this clinic. One of the problems of suffering a rare disease such as Fabry is that any individual doctor is likely to have limited experience in treating the condition. In setting up the Fabry Clinic many aims were achievable such as:
- To improve the medical service to Fabry patients
- To improve the knowledge of the condition by expanding clinical experience
- To set up a database documenting the clinical features of Fabry disease in the Australian population.
- To centralise care so that new treatments can be initiated when they become available
- To keep abreast of advances in Fabry disease research
Fabry patients saw their Fabry Doctor at this centre privately and were bulk billed.
The years that followed saw the Fabry Support Group formulate a Mission Statement 'Uniting the Australian Fabry Community, by working together to improve the lives of those affected by Fabry disease'.
Fabry Australia became a National Incorporated Association representing individuals and families diagnosed with Fabry disease from across Australia. Fabry Australia did much fundraising (sausage sizzles, cake stalls, craft stalls) to raise money to fund a medical student to do research into Fabry Disease and the members of Fabry Australia happily volunteered themselves to be studied and tested for this project. Enzyme Replacement Therapy (ERT) trials of drugs Replagal and Fabrazyme began in the year 2000 but were mainly available to those patients who were experiencing vital organ damage. This program was also available to some interstate patients but not all. In 2004 funding of the treatment of Enzyme Replacement Therapy became available for 55 patients with Fabry Disease via the Life Saving Drugs Program.
Fabry Australia – Turned 20!
Fabry Australia celebrated its 20th Birthday in 2014. A lovely book was put together with lots of photos from the last 20 years. If you are interested in a copy, please contact email@example.com.
Photo of the late Lari Allenbick a founder member of Fabry Australia celebrating his 60th birthday. He has been on ERT for 11 years! Photo taken in 2007.