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