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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 a registered not-for-profit charity patient organisation to raise awareness and educate others about Fabry Disease, a very rare life-threatening genetic disease. 

Fabry Australia is a patient membership organisation made up of members 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 

  • Improve contacts, information and support among people affected by Fabry disease and families, within Australia.
  • Bring about more public awareness of Fabry Disease.
  • Improve the medical services to Fabry patients in Australia.
  • Promote and support research into Fabry Disease.
  • 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.
  • Build links with families, clinicians, researchers and support groups, to strengthen and support local knowledge about Fabry disease.
  • Co-operate and collaborate with other Fabry related groups and individuals interested in rare diseases to promote common interests.
  • Help raise money in order to support with achieving these aims.

 

Fabry Australia Strategic Plan

Fabry Australia has a Strategic Plan 2015-2018 is reviewed by the Fabry Australia Committee on an annual basis. It is an overview of the Mission, Objectives of Fabry Australia and outlines the key objectives and activities of the organisation. If you would like to get involved or help 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

 Further details are located in the Fabry Australia Brochure

Fabry Australia Registration Details

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

Fabry Australia Inc is an Incorporated Association of Victoria Registration Number A0029817E

Fabry Australia is registered as a charity with the Australian Charities and Not-for-profits Commission (ACNC)

ABN 70 053 079 595

Fabry Australia has received funding from Amicus Therapeutics, Glaxo Smith Kline (GSK), Sanofi Genzyme and Shire Australia. Our policy on working with pharmaceutical companies describes how we maintain our independence and integrity.