Use this directory to find patient support organisation including condition and diagnosis-specific formal and informal groups and Disabled Persons and Family Organisations.
Search for a particular diagnosis or condition using the search box.
If you are looking for mental health and wellbeing related supports, such as therapists and peer support, please search the Centre of Perinatal Excellence e-COPE directory.
Fabry Australia
About the organisation
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. Social media enables us to interact and communicate with members in a way that traditional websites cannot. We use social media as a means of remaining transparent providing timely information to our members.
Fabry Australia Fabry Patient Meeting – see Events for upcoming meetings throughout Australia
Fabry Australia National Fabry Patient Conference – biannual 2 day conference
Fabry Australia Newsletter (E News) – sign up via the website link or email Fabry Australia directly.
Liaising with Pharmaceutical Industry
Fabry Australia Medical Advisory Committee
Fabry disease Advocacy
Fabry Australia Wellness Retreat
Fabry disease invited speaker meetings
Morning coffee meetings with individuals that are newly diagnosed with Fabry disease
Fabry disease research
Fabry Australia ‘FUNdraising’ activities
Fabry Awareness Month – April
Condition or anomaly
Fabry disease, Xq22.1, 301500, ANGIOKERATOMA CORPORIS DIFFUSUM, ANDERSON-FABRY DISEASE, HEREDITARY DYSTOPIC LIPIDOSIS, ALPHA-GALACTOSIDASE A DEFICIENCY, GLA DEFICIENCY, CERAMIDE TRIHEXOSIDASE DEFICIENCY