Organisation

Rare Voices Australia Ltd.
City :
Sydney
Phone :
+61299675884
Contact
Event organised
Australia

Rare Voices Australia Ltd. City: Sydney Phone : +61299675884

Highlights from Rare Disease Day 2014 in Australia

In 2014 Rare Disease Day events  were held all over the Australia. Seminar Days (Queensland, Victoria and New South Wales). Fun Run (Far Nth Qld). Morning Teas (Perth), Cocktail events, Balls, Movie night (ACT), BBQ (Sydney, Tasmania). RVA published and launched ‘The Australian Experience of Living with a Rare Disease’at Parliament House Canberra. CEO of Rare Diseases UK; Alastair Kent to speak about the need for a National Rare Disease Strategy which the UK launched in November 2013. RVA received bi-partisan support for a Rare Disease Registry and  to establish a Parliamentary Friends of Rare Diseases now launched.

Rare Voices Australia Ltd. (RVA)

Rare Voices Australia (RVA) is Australia's national Rare Disease Alliance advocating for those who live with a rare disease. RVA provides a strong common voice to promote improvement and a more co-ordinated approach to Australia's  healthcare system that works for the Australian rare disease community. RVA collaborates and connects with State Peak body organisations, Patient Organisations, Governments, Researchers, healthcare professionals and a round table of companies to promote research, diagnosis, treatment and services for all rare diseases in Australia.  RVA is the unified voice of ALL Australians living with a rare diseases and provides leadership in advocacy on national rare disease issues for the benefit of those living with a rare disease.

Further information please visit Rare Voices Australia website http://www.rarevoices.org.au

 

 

 

 

 


http://www.rarevoices.org.au
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