Association of Genetic Support Australasia


Unmet Needs in the Rare Disease Community


Hunter, NSW



Funding Dates

November 2012 - December 2013

Living with or caring for someone with a rare disease can be an intensely isolating experience resulting in financial and social disadvantage.

The Association of Genetic Support of Australasia (AGSA) aims to reduce this isolation by providing information, peer support and counselling services.
The Hunter has been identified by the AGSA as having limited services resulting in feelings of isolation and a lack of access for families and carers of people with rare diseases in the region.
The Unmet Needs in the Rare Disease Community project will provide an understanding of the challenges and access issues experienced in the area and identify solutions to help improve support and information.
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