Rare Voices Australia a National Alliance for ALL Australians living with a rare disease, disorder or condition and their families, unified as one voice.
Rare Voices Australia has 4 part time staff and is managed by a Board of Directors. The Board is made up of a dedicated group of individuals each of whom has first-hand experience both of living with rare disease and of working in the Rare Disease sector.
Rare Voices Australia works with many stakeholders all with an interest in rare diseases. RVA puts the patient voice in the centre of all that it does. Further detail about the strategy, work and services undertaken by RVA, please go to the website; http://rarevoices.com.au
To read more about the outcomes of the WA 2011 symposium, see:
Orphanet Journal / Awakening Australia to Rare Diseases: Symposium Report and preliminary outcomes
http://www.ojrd.com/content/6/1/57
- Category:
- Non-governmental organization (ngo)