Rare Voices Australia (RVA) is Australia's non-profit, national peak organisation advocating for all who live with rare disease. RVA provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare diseases. RVA works with patients, key peak bodies, governments, researchers, clinicians and industry to promote rare disease research, diagnosis, treatment and services. The health care system is geared towards diseases with larger patient numbers. Australia needs a health system that is also ‘Fair for Rare’.
RVA knows that effective rare disease policy transforms patients’ lives. This is articulated in our key policy platform: Call for a National Rare Disease Framework: 6 Strategic Priorities. RVA influences and contributes the health policy agenda via:
Policy – RVA develops and contributes to rare disease policy development.
Submissions to a range of Government and Departmental inquiries.