Dialog Box

Loading...

Fabry Australia is committed to uniting the Australian Fabry community, by working together to improve the lives of those affected by Fabry disease.

Fabry Australia  incorporated in 1994 and is registered as a not-for-profit charity patient organisation to raise awareness and educate others about Fabry disease. Fabry Australia is a Patient Association made up of members and families diagnosed with Fabry disease. Fabry Australia encourages and supports research, co-ordinated care, ongoing management and treatment of Fabry disease and supports increased services and facilities  to access diagnosis and consultation of those living with Fabry disease.

Mission

Uniting the Australian Fabry community, by working together to improve the lives of those affected by Fabry disease.

Aims and Objectives 

  1. Improve contacts, information and support among people affected by Fabry disease and families, within Australia.
  2. Bring about more public awareness of Fabry disease.
  3. Improve the medical services to Fabry patients in Australia.
  4. Promote and support research into Fabry disease.
  5. Share information on Fabry disease, ongoing management and care as well as available treatments /therapies, to Fabry patients, their supporting carers and related Fabry stakeholders.
  6. Build links with families, clinicians, researchers and support groups, to strengthen and support local knowledge about Fabry disease.
  7. Co-operate and collaborate with other Fabry related groups and individuals interested in rare diseases to promote common interests.
  8. Help raise money in order to support with achieving these aims.

 

Fabry Australia Strategic Plan

Fabry Australia has a Strategic Plan which is reviewed annually by Fabry Australia's Management Committee. It outlines the Mission, Objectives and activities of Fabry Australia. If you would like to get involved or if you have any feedback, please do not hesitate to contact us directly.

Rules of Association

Please download Fabry Australia's Fabry Australia Incorporated  Rules 

Accounts 

Please download Fabry Australia's 2016 Accounts

Policies 

Please download Fabry Australia's Working with the Pharmaceutical Industry Policy

Please download Fabry Australia's Non-Endorsement Policy

Please download  Fabry Australia's Guide to Using Facebook for Patients and Families Living with Fabry Disease

Further details are located in the Fabry Australia Understanding Fabry Disease Fact Sheet Booklet

Fabry Australia Registration Details

Fabry Australia is registered as a charity with the Australian Charities and Not-for-profits Commission ABN 70 053 079 595

Fabry Australia is an Incorporated Association of Victoria Registration Number A0029817E

Fabry Australia has Deductible gift recipient status (DGR), all donations $2 and over are tax deductible.

 

Funding Fabry Australia 

Fabry Australia receives no direct Government funding to operate or provide services to its members. It operates as a membership model relying on member subscriptions, fundraising funds, educational grants and donors for its projects to further support the Australian Fabry community. Fabry Australia receives grants from companies including pharmaceutical companies. The following companies have made contribution to Fabry Australia educational projects; Avrobio, Amicus Therapeutics, GlaxoSmithKline, Sanofi Genzyme, Shire Australia. Fabry Australia has written a policy 'Working with pharmaceutical Industry' which outlines how Fabry Australia maintains independence and integrity as a patient organisation with the patient as the main focus of all that it does as outlined in its strategic plan. Further details see Pharmaceutical Industry page on our website.