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GUARD Collaborative

The GUARD Collaborative is a coalition of peak body organisations, Genetic Support Network Victoria, Genetic Alliance Australia (NSW), Syndromes Without A Name (SWAN Australia) and Genetic and Rare Disease Network (WA) that came together to:

  • Increase awareness of genetic, rare and undiagnosed diseases in Australia
  • Develop agreed position statements on matters that impact people living with genetic, rare and undiagnosed diseases in Australia to represent their views and for use in advocacy
  • Collaborate to reduce duplication and ensure consistency of messages on matter of importance to the genetic, rare and undiagnosed disease communities in Australia
  • Develop and deliver activities in the relevant national documents, including the National Genomic Health Framework and the soon to be developed National Rare Disease Framework.

 

A Collaborative Approach to Genetic, Undiagnosed and Rare Disease

GaRDN, GSNV, GAA, and SWAN are committed to maintaining a positive and cooperative working relationship and where practicable to work collaboratively to deliver outcomes related to the goals and objectives detailed above.

Each organisation has its own goals to achieve but seeks to ensure that work is undertaken using the best available information shared between organisations across Australia.

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Rare Disease Knowledge Base

The Genetic & Rare Disease Knowledge Base is aimed at the genetic and rare disease community with a centre of knowledge, guidance, advice and hope. It is a collection of invaluable resources including condition information, support groups, support organisations, and health professionals with a special interest in genetic and rare conditions.

Health Professional Register

Rare disease specialists can also be rare. This register is a list of Health Professionals with specialised knowledge and experience in rare and genetic diseases. The register can encourage collaboration, a multidisciplinary approach and be a valuable resource for Health Professionals caring for people with rare and genetic diseases.

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