our services

 

Website and Blogs Interactive website for people with Fabry Disease, their family and friends and service providers, including online forums for internet based discussion; make a referral or send us your query.

Fabry Support Group Meetings: We provide you with guest speakers from both Australia (interstate) and overseas who give current presentations relevant to Australians with Fabry Disease. Topics cover a range of topics concerning Fabry Disease and treatments of Fabry Disease. The information is current, relevant and based on recent published research.

Fabry Support Group AGMs: Fabry Australia has its Annual General Meeting in the second half of the calendar year and it is held at a different Australian Capital City each year, allowing opportunity for FSGA members to attend. The Fabry Australia Executive Committee Officers are declared vacant and opportunity arises for financial members to become elected to the Fabry Australia Executive Committee.

Newsletters: Fabry Newsletters are published quarterly and available to members

Conferences: Fabry Australia holds conferences for Fabry Australia Members to attend. Providing presentations from world experts in Fabry Disease and its treatments

Liaising with Pharmaceutical Companies: Fabry Australia liaises with 3 Pharmaceutical Companies: Genzyme, Shire and Amicus.

Co-ordinating with Doctors and Fabry Treatment Centres: Fabry Australia meets with the Australian Fabry Treatment Centres to keep abreast with current issues surrounding treating Fabry patients.

Lobbying Australian Federal Government: Fabry Australia is asked to make submissions on behalf of the Australian Fabry Community highlighting the needs of Australian Fabry patients and their families.

08-Dec-2009

Fabrazyme Short Supply for Fabry Patients in 2010

Genzyme Australasia have issued a patient letter for all Australian Fabry patients.

07-Dec-2009

‘World Rare Disease Day’ Feb 28th 2010

FSGA are represented on Australia’s World Rare Disease Day

This section of the website contains published articles from the following sources:

  • Newspapers 
  • Magazines
  • Research Papers
  • Videos
  • Television

There are some great you tube sites suitable for educating young Fabry patients.

Watch the recent Fabry disease episode of House on FOX TV...

Fabry Australia gratefully acknowledges the generous support of the following organisations that are helping to make a difference to people and families affected by Fabry disease.
 
   
               
Fabry Support Group Australia         ABN 70 053 079 595        Reg Charity A0029817E