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Fabry Australia Projects and Programs

Fabry Australia operates as an Association Incorporated Patient Organisation. It has two part time staff; Managing Director and Administrative Officer undertaking the day to day business of Fabry Australia. A management Committee are responsible for Fabry Australia's strategy, governance and finances. The Committee members are unpaid volunteers and all have a personal connection with Fabry disease. 

Fabry Australia undertakes many activities, projects and programs to further support its membership. Some of which include;

  • The Fabry Australia website
  • The Fabry Australia Social Media page and Fabry Australia Group Page which is under 'Secret' setting respecting privacy of those individuals posting about medical and personal Fabry experiences.
  • Fabry Australia Fabry Patient Meeting - see Events for upcoming meetings throughout Australia
  • Fabry Australia Newsletter (E News)  - sign up via the website link or email Fabry Australia directly.
  • Liaising with Pharmaceutical Industry
  • Fabry Australia Scientific Medical Advisory Committee
  • Fabry disease Advocacy
  • Fabry Australia Retreat weekends
  • Fabry disease invited speaker meetings
  • Morning coffee meetings with individuals that are newly diagnosed with Fabry disease 
  • Fabry disease research