Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability, and other systems that work for people living with a rare disease. Our person-centred focus sees us working with all key stakeholders, including people living with a rare disease, governments, peak bodies, researchers, clinicians, and industry. We advocate for the best outcomes for Australians living with a rare disease.

Learn more about RVA by visiting RVA’s website .

Rare Voices Australia’s Disability-Related Submissions and Resources

• 2024: Department of Social Services National Carer Strategy Consultation
• 2024: Rare Voices Australia submission regarding the draft lists of National Disability Insurance Scheme Supports
• 2024 NDIS Act Draft Legislation Submission
• 2024 NDIS Provider and Worker Registration Taskforce
• 2024 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Response to Recommendations
• 2024 Joint Standing Committee on the National Disability Insurance Scheme: NDIS Participant Experience in Rural, Regional, and Remote Australia
• 2023 National Disability Insurance Scheme Independent Review
• 2022 Capability and Culture of the National Disability Insurance Scheme
• 2022 Second Submission: Joint Standing Committee on the National Disability Insurance Scheme (NDIS) – Current Scheme Implementation and Forecasting for the NDIS
• 2021 Interim Submission: Joint Standing Committee on the National Disability Insurance Scheme (NDIS) – Current Scheme Implementation and Forecasting for the NDIS
• 2021 Joint Standing Committee on the National Disability Insurance Scheme Parliamentary Inquiry into Independent Assessments
• 2021 National Disability Insurance Agency public consultation: access and eligibility policy with independent assessments
• 2020 RVA Position Statement – Government response to the Tune Review of the NDIS Act 2013
• 2020 National Strategic Action Plan for Rare Diseases
• 2019 Disability and Rare Disease: Towards Person Centred Care for Australians with Rare Diseases