Interview with Megan Fookes, Director, Rare Voices
Rare Voices Australia is a new organisation that has been established after the national rare diseases symposium in 2011. Can you please begin with giving our readers an introduction to…
Address: PO Box 4419 Castlecrag NSW 2068 Australia
Tel: +61 410 702 535
Web: http://rarevoices.org.au/
Rare Voices Australia (RVA) is a new organisation that has been established in response to the consensus call from over 200 national attendees at the inaugural ‘Awakening Australia to Rare Diseases’ international symposium held in Fremantle, Western Australia, in 2011.
The primary objective of Rare Voices Australia is to unite and represent the interests of all Australians living with a rare disease or disorder, and their families, as one voice, with the immediate aim of increasing both public and political awareness of the burden of rare disease, and the ultimate aim of achieving better outcomes nationally for those whose lives are impacted.
As a strong and unified voice we can identify and address common issues; promote cohesive stakeholder collaborations and networks locally, nationally and internationally; lobby for improved access to information and best-practice standards of care for people living with rare conditions; influence public policy, and advocate for the development of a National Plan for Rare Diseases.
Rare Voices Australia is a new organisation that has been established after the national rare diseases symposium in 2011. Can you please begin with giving our readers an introduction to…
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