POLICY & ADVOCACY
Rare Voices Australia (RVA) is Australia’s peak body for rare disease, advocating for Australians living with rare disease. We provide a strong, common voice to advocate for health policy and a healthcare system that works for people living with rare disease. Our patient-centred focus sees RVA working with key stakeholders including patients, key peak bodies, governments, researchers, clinicians and industry to promote rare disease, diagnosis, access to treatments, data collection, coordinated care, access to services and coordinated research.
Australia’s healthcare system is geared towards diseases with larger patient numbers - we need a system that is also ‘Fair for Rare’. Effective rare disease policy transforms patients’ lives. This is articulated in our key policy document: Call for a National Rare Disease Framework: 6 Strategic Priorities. RVA influences and contributes to the health policy agenda via:
- Policy and contribution around rare disease development.
- Submissions to a range of Government and Departmental enquiries.
As the voice of all Australians impacted by rare disease, our advocacy work takes on numerous forms including:
- Providing leadership on national rare disease issues.
- Working alongside the Federal and State Governments to reiterate the need for a National Rare Disease Framework and effective rare disease policy.
- Advocacy guidance, mentorship and education for our partner organisations and Australians living with rare disease.
- Raising awareness of the issues facing the rare disease community by engaging in effective storytelling that promotes understanding, motivation and empowerment.
- Working with all stakeholders to influence improved outcomes for people living with rare disease.
- Collaborating and connecting with all Australians to help share and improve the experience of living with a rare disease.