Rare Disease – Support, Education and Training Grant Update


Rare Voices Australia (RVA) is excited to be a member of the consortium, led by the University of New South Wales (UNSW), that was a recipient of the Australian Government’s Rare Disease – Support, Education and Training Grant. Click here to read the Government’s media release.

The $1.9 million in funding will transform Australia into a global leader in the provision of rare disease awareness, education, support and training via the RArEST (Rare Awareness, Education, Support and Training) Project. Click here to read UNSW’s media release about the announcement.

Congratulations to RVA Partner, Childhood Dementia Initiative, for being awarded $185,000 for the National Childhood Dementia Awareness, Support and Education Project.

We also congratulate the Australian National University for receiving $198,000 for work on a project that will develop a diagnostic reasoning tool to support recognition of rare diseases with different presentations, based on three indicative diseases – myositis, primary immunodeficiency disorder and sarcoidosis.

This Government funding will contribute to the implementation of the National Strategic Action Plan for Rare Diseases across all three Pillars (Awareness and Education; Care and Support; and Research and Data).

Funding of $1 million had already been provided for the development of the Rare Awareness Rare Education (R.A.R.E) Portal. This multi-purpose website will include information and resources for rare diseases that are customised for the Australian context. Click here to read more.

RVA thanks the Australian Government and the Hon Greg Hunt MP for their ongoing support of people living with a rare disease.

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