Fabry Australia's Services
Fabry Australia employs a part time Administrative Officer and the Management Committee are unpaid volunteers. All of the Committee live with Fabry Disease or care for a partner or child with this rare condition. Fabry Australia is thankful to its members, followerers and volunteers for their continual support. The success of the group is dependent on those who continue to work behind the scenes in an effort to make a real difference for the Australian Fabry community.
Fabry Australia offer a range of services and implement projects in an effort to further support its membership.
Fabry Australia Communicaitons;
The Fabry Australia website: The Fabry Australia website is updated regularly for those living with Fabry disease, their family and friends.
The Fabry Australia Social Media: Fabry Australia has a facebook page found on the home page of this site. This is another form of ‘mutual support’. There is also a closed page for members to talk about sensitive matters in a more private portal.
Fabry Australia Meetings: Fabry Australia hosts Australian Fabry Expert Patient Meetings and invite speakers who are ‘medical Fabry experts’ from Australia and overseas. Presentations cover a range of topics concerning Fabry Disease, ongoing management, care and treatments of Fabry Disease. The information is current, relevant and based on recent published research.
Fabry Australia National Fabry Meeting: Fabry Australia hosts a National Fabry Meeting often in the second half of the calendar year and it is held at a different Australian Capital City each year, allowing opportunity for members to attend. FA hosts these every 2 years.
Fabry Australia E-NEWS / Newsletters: Fabry Australia E-NEWS is a quarterly newsletter (sometimes more frequent as needed) to update members of current, relevant information on all things ‘Fabry’ both in Australia and other regions.
Liaising with Pharmaceutical Companies: Fabry Australia liaises with Pharmaceutical Companies to update members on current information related to research into Fabry Disease healthcare and treatment options as well as clinical trials.
Co-ordinating with Doctors and Fabry Clinics: Fabry Australia meets with the Australian Fabry Clinics to keep abreast with current issues surrounding treating Fabry patients.
Fabry Disease Advocacy: Fabry Australia is frequently asked to make submissions on behalf of the Australian Fabry Community highlighting the needs of Australian Fabry patients and their families to ensure ongiong care and access to treatment is met.